Jakub S

16 January 2015

Story written 2015

Jakub was diagnosed with long segment Hirschprung disease when he was four days old. For five years he was on total parenteral nutrition as he didn’t absorb any food and due to that he was listed for a multi organ transplant.

In September 2014 Jakub had his transplant and everything went well. Unfortunately, two days after discharge from hospital, he started rejecting all organs. Since 10th October 2014 he has been at King’s College Hospital. After very strong drugs, Jakub’s rejection was under control and we thought he was getting better, but in January he became unwell again.

After lots of tests, Jakub had to go to theatre for another surgery as he had an obstructed bowel. The transplant surgeon said to us that Jakub’s bowel didn’t look good and that it looked like one big cocoon. Due to the obstruction some of the bowel had to be removed and it was sent for tests. When the results came back we were told that Jakub has cancer in his new bowel.

Jakub started chemotherapy in January 2015 and it has now finished after just four doses. Jakub also spent a long time in intensive care after his last surgery. After all the post transplant complications, we know that it is impossible for these organs to work again, and so Jakub is re-listed for another multi-organ transplant of five organs (small bowel, large bowel, liver, stomach and pancreas).

Jakub is now on total parenteral nutrition again and all of his medicines are given intravenously. As Jakub has been in hospital for a very long time, he has lost his mobility. He’s desperate to be able to walk and run around again like he did before transplant.

At the moment Jakub remains stable and as well as he could be. It’s still a very long way to go but we don’t lose our hope.

Update 6th November 2016

We are very sad to say Jakub passed away peacefully last night. Thank you to everyone who has sent him post or fundraised for our Chessington trip. His last weekend out of hospital was spent at Chessington, going on rides, laughing and even eating pasta!

Update 9th October 2016

We’re still at King’s and Jakub has been on the intensive care unit since Monday afternoon.

After all the investigations and tests he’s had done we finally got the results. Now it’s black and white, Jakub was diagnosed with GVHD. A lot of things happened since this diagnosis. It all started with a rash and then he was struggling to keep up his haemoglobin and needed a blood transfusion every day. We stayed all that time on High dependency unit as nothing was getting any better. His skin was getting worse everyday, all of his blood results were bad. Dr’s made the decision to start rutuximab, ganciclovir, many antibiotics, high doses of steroids and also photopheresis. To start photopheresis Jakub needed a new line. So far he only had ECP (photopheresis) for two days. Again everything was awful and the pain was just too much for my little boy to deal with. Every touch was so painful. That’s why at the moment Jakub is on PICU. Unfortunately this week his blood results are not good and he’s so neutropenic and his white cell count is very very low so he couldn’t have photopheresis this weekend. On Monday he’ll be having stem cells. Jakub’s eyes are also affected by GVHD. His skin is still really bad… At the moment there isn’t any chance to extubate him as it’s just too much.

Only one positive thing in all of this is that Jakub’s haemoglobin is holding nicely. As always we would like to thank you everyone who is helping us. Every message, every prayer, positive thoughts means a lot and helps us to get through it.

We would love to thank everyone who sends Jakub post, cards, letters, parcels and everyone who remembers about him in their prayers. He really needs it now.

Update 27th September 2016

Jakub has again spent most of the year in hospital.

Earlier in the year Jakub had some good times and was able to be at home, but in early June he had to be readmitted to PICU and placed on a vent due to PCP. While recovering from PCP he developed severe skin problems and light sensitivity which was put down to a drug reaction. He was discharged at the end of August, just in time for the Post Pals Chessington weekend. Jakub had a fantastic weekend but a few days later was back in PICU as his HB fell to only 2. He is now in HDU and his skin is getting worse, it’s completely blistered, very painful and itchy. It has been confirmed he has Graft-vs-host disease, as steroids haven’t worked they tried to start him on photopheresis treatment (a little like dialysis, the machine takes the blood out, treats it with UV and returns it to the body) but his line was too small. Jakub will have surgery for a new line and start the treatment. He will be in hospital (HDU) for a long time again.

A big thank you to everyone who has sent Jakub post and made him smile.

Update 10th December 2015

Jakub was discharged from King’s at the beginning of November. We have mostly been able to stay at home, although we have had lots of hospital visits. Jakub is such a strong little boy and he has been through so much. After his second transplant, he had a few complications as he had a leak in his stomach, but it healed on its own. He had two bouts of rejection and he needed high doses of steroids for it, luckily he responded well to the treatment. He had a Hickman line infection and then the line was broken, which meant he needed surgery to replace it. Jakub had a CT scan with  a contrast injection through a cannula, the contrast leaked and it resulted in a very bad injury on his arm.

Jakub’s EBV was again very high (this could cause the cancer to return) so the doctors decided to start Rituximab. When we thought we would finally be able to go home, Jakub had a very bad chest infection and ended up with a chest drain. He could not tolerate much milk through his NG tube and was on PN, but once all fluids from his chest drained, he made very good progress with milk.

At home he made an even bigger progress with a milk feed and Jakub doesn’t need PN anymore; this is such a big thing for me. Jakub still needs IV fluids, but hopefully soon we can stop them. We had to go over to King’s for infusions, but just for a few hours and then we returned back home. We also had to go over to our local hospital for IV correction of magnesium a few times. Jakub had a cold, but this time round just oral antibiotics helped, and we didn’t have to stay in hospital.

All I can say is it’s the best thing ever for Jakub to be at home, as he’s making really big progress with his walking, and we have our boy back. Same cheeky, smiley, and happy Jakub.

As always we would like to say a very big thank you to everyone who is supporting us and Jakub, as it means a lot to us. We also want to thank you to everyone who sent Jakub birthday wishes, presents and cards.

Unfortunately as usual Jakub spent his birthday in hospital, but let’s hope this Christmas we can stay at home for the first time ever since Jakub was born.

Update 7th September 2015

Jakub has been doing very well following his transplant. Within a week he was in HDU and then moved to the main ward. The pictures of the organs taken out were shocking and so far these new organs have been doing well. Following a line infection the scopes however have shown mild rejection in his bowel. He is managing to eat small amounts and tolerate 5mls an hour feed, as well as using his walking frame a little.

Update 13th August 2015

Jakub got his call! He is currently in theatre receiving another 5 organs, he was very happy to get his call and laughed all the way to theatre!

Update 7th May 2015

We’re still on Rays of Sunshine ward and we’ll stay here for bit longer I think. The doctors mentioned home about a month ago but we didn’t go anywhere, as Jakub started spiking temperatures again. We have also had a few problems with our local hospital. They said that they want us to go there as they want to see Jakub, but we disagree with their plans. This is because we’re too scared to take Jakub there whilst he’s well enough to be discharged home in case he’ll catch something, as unfortunately kids like him are in high risk of catching infections and we really don’t want to be stuck in another hospital.

Jakub’s bloods results are still not great but we know that they won’t be good until he’s had another transplant. His chemotherapy is finished and haematology consultant is happy with Jakub’s results.

Jakub is so happy as we’re going out every day just to give him a little bit of break from hospital. He started to stand up for a very short time but it’s a huge step for him and he’s desperate to be able to walk again.

As we’re going out every day, we have our little routine, and every day we’re going to the hospital post room to check if there are any parcels or letters for Jakub! He absolutely loves it! He has the biggest smile ever if there’s something for him! We would love to say a big thank you to Post Pals and Share A Star as it really makes a huge difference! We’ll never forget about the help and support we get from you and everyone around the whole world who thinks about us. THANK YOU SO MUCH!

We meet lovely people in hospital who have been here for a long time, like us. Unfortunately April wasn’t a good month in this hospital, as two beautiful kids who spent a long time in here passed away. It’s so hard to be here for so long and we just hope that we can go home soon.

Update 30th March 2015

After 40 days on PICU and 37 days on HDU we finally been moved to Rays of Sunshine ward! Jakub is so happy to be back here and so am I! He’s still on a lot of medicines for his blood pressure, antibiotics and painkillers. We’ve been told that he may have influenza and that can be the reason why he’s spiking temperatures every day. Let’s hope it will only get better now and we don’t need to go back to PICU and HDU for the third time during our stay in here.

Update 7th March 2015

After a long 40 days in the intensive care unit Jakub is extubated and today we are moving to HDU. He’s still very sleepy and has a few issues with his high blood pressure. He still has 4 more doses of chemo to go but it’s lovely to have my little boy back and hear him talking about so many different things when he’s awake!! I’m so happy and pleased!!

Update 14th February 2015

Jakub is still in intensive care. He’s still on filter for his kidneys, still on a vent. He had a few more tests done – CT scan, bone marrow aspirate, etc. Some of them looked good, some of them not good. He’ll stay as he is for another good couple of days.

Last Saturday they had to start chemotherapy as his liver started to play up and his bowel isn’t in good condition. We’re still waiting for more results from histopathology and hopefully next week we’ll have more information. Last x-ray showed that his lung is collapsed so he can’t come off the vent. Once he has finished 6 doses of chemo he’ll need stronger chemotherapy in Great Ormond Street.

Jakub has now became resistant to most of the sedation drugs so he wakes up and all he wants to do is pull all his lines and tubes. It’s not good for the nurses but that’s my boy! I know we have a long journey to go but we can do it!

A massive thank you for all the cards and parcels from all around the world for Jakub!! I can’t wait to see Jakub’s big smile when he sees them!

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Emma W

10 January 2015

Story written 2015

Emma was daignosed in 2011 with Fanconi anemia, a life limiting blood disorder. This causes bone marrow failure and a higher chance of head and neck cancers.

Emma will undergo a transplant in spring 2015. Her dad will be the donor as we have been unable to find a matching donor. Her brother was tested but also has the condition. Emma is often tired and weak and she has regular blood and platelet transfusions.

Update 24th July 2015

We have decided that it is time for us to focus on the coming weeks and thought it was best that Emma move on from Post Pals.

We would like to thank all the wonderful people who have made both my children grin and play with the letters and tokens sent by post.

Whilst we have a challenge ahead of us as Emma is admitted for her BMT, we have decided to focus on giving rather than receiving and thought another child in need could benefit from her moving on.

We have made a decision and commitment to write to a different Pal each week hoping to make many more smiles.

Post Pals is amazing and I feel very fortunate that Emma found you when we did.

Update 2nd June 2015

Emma goes into hospital for her bone marrow transplant at the end of July and we have been told this will be for 6-8 weeks. We have a box with all the post we have so far recieved that I am planning to take with us so that we always have something to read each day.

Thank you for everything you do, it is very much appreciated.

Update 1st May 2015

Emma had her hickman line inserted as she now requies transfusions weekly. Her transplant is planned for June. We still need to find an unrelated matching donor.

Thank you for all her birthday cards and gifts.

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Sophie L

10 January 2015

Story written 2015

Sophie woke up on her last day of school with a very bad pain in her chest. She wasn’t able to breathe properly and couldn’t walk very well. We ended up going to our local hospital and they said it was gastroenteritis, but a nurse suddenly wanted to do tests when her sats dropped a lot. The tests later came back saying that Sophie had acute kidney failure and the gene of pancreatitis.

Sophie was in intensive care for nearly 3 weeks on a ventilator fighting for her life. In the end, Sophie fought for her own life and came round and started to hallucinate for days with all the drugs she had been on. Months later we found out that she would have to receive dialysis 3 days a week.

Update 14th June 2016

Sophie is currently revising for her exams that she missed at school because she was taken ill, she has been very stressed over the past 2 weeks because of this. As Sophie turns 18 in August she is moving to her local adult hospital and is having a appointment with her consultant there very soon.

Update 29th January 2016

Sophie went to see the kidney man at the Royal Liverpool for a chat and spoke about transplant, about what the risks were and what medication she would be on.

Update 3rd January 2016

Sophie has been feeling under the weather these past few days with her stomach. Hopefully it isn’t anything serious! She should be having an ultrasound within the next few days.

Update 5th December 2015

Sophie has been quite stable over the past few months! Treatment is going well and she is looking forward to Christmas!

Update 13th August 2015

Sophie was supposed to be having a peg fitted so that she can feed through the stomach instead of having a tube through her nose. However, the stomach pain she’s had shows that the vessels in her liver are expanding. As a result, Sophie is not able to have a tube in to her stomach, as there would be a risk of her bleeding in to the stomach and attacking the vessels.

Update 24th July 2015

Since Sophie had her gallbladder out she has gone down hill. She is being sick once a week which isn’t normal and is having regular ultrasounds. These past two week’s Sophie has been in chronic pain with her back and stomach and is taking regular paracetamol which seems to ease the pain slightly. She had an ultrasound which showed that her liver blood vessels are enlarged and if she is sick with blood she needs rushing into our local A&E.

Update May 2015

Sophie was admitted into her local hospital with pains in her stomach and was put on IV painkillers (paracetamol and morphine). She had to stay over night and was transferred back to Alder Hey in the early hours of the morning. She had a CT scan to show that she has gallstones!

Due to Sophie having pancreas problems and the fact she is now 16, we had to go to the Royal Liverpool for surgery to get her gallbadder and gallstones removed. Luckily, Sophie was only in hospital for a night and her recovery was brilliant!

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Kai Y

10 January 2015

Story written 2015

Kai was diagnosed when he was 3 with an astrocytoma. He underwent 18 months of chemo at 5 years old which had to be stopped after 12 months as Kai almost lost his life several times due to infections. Kai’s tumour stayed stable for 3 years and he underwent stereo tactical radiotherapy. He had the first session on his 10th birthday, which was a rubbish way to spend it! However after the radiotherapy, Kai’s tumour grew straight away and he was forced to have brain surgery two days before Christmas Day 2012!

It was when the histology report came back that they gave us the news that it was really rare. It is so rare that Kai was only 1 of 2 children here in the UK with it. The surgery took almost 6 hours and they managed to get 50% out. As the tumour was not fully resected, Kai will just keep on relapsing. So here we are, 4th time relapse. We have since found out the tumour does NOT respond to chemo or radio so our only option is more surgery which is getting very tricky because of the site of the tumour.

Kai is such a happy, loving, caring boy. I’d love to give him the world!!

Update 7th March 2017

Kai is no longer at school, it has been deemed he is too ill medically to attend mainstream school so is being home educated full time. He is missing his friends, so desperately needs cheering up!

Update 4th January 2017

Kai is doing really well. He’s back to school. He has the odd few bad days, but other than that, he’s great!

Update 6th September 2016

Kai is doing well, pain is well controlled most of the time with a concoction of medication. MRI next week so will see from there how things move forward.

Update 7th August 2016

Kai is doing very well, NG Tube has been removed and he is still in rehabilitation for approx next 6 months.

Update 3rd May 2016

Kai’s still on a feeding tube but able to eat certain things, so please check before sending. He has had an MRI which shows a stable tumour. His pain is being managed by a lot of opiates but he is remaining well at the moment.

Update 21st January 2016

Kai is now being tube fed, so please don’t send drinks and please contact us if you’re sending food so we can confirm if he can eat it or not. He is due another tumour debulk at the end of January where he will be out of action until at least Easter time.

Update 23rd September 2015

Kai is doing well at the moment, he has returned to school and is enjoying doing normal things again. He still has ‘off’ days and looks to his post from Post Pals for comfort at those times.

Update 10th July 2015

Kai is going in to hospital this Monday at Kin’s College and his operation will be first thing Tuesday morning. We will let you know how it goes.

Update 4th July 2015

We have been told if Kai is operated on again he will become blind. He will lose his sight and also the use of his arms and legs! We are seeing another neurosurgeon in Newcastle on July 29th for a second opinion.

Update 1st May 2015

We would love to say thank you to everyone sending Kai post. We will get round to replying once Kai is able to do so again. We are awaiting a date for his next brain surgery but he loves getting all his post.

Update 14th April 2015

Kai is very unwell at the moment. We are awaiting more brain surgery in Newcastle where we will have to relocate for some time. He is in a lot of pain daily and very heavily medicated but enjoys all his post and very much looks forward to it on a daily basis.

This month he has received lots of lovely happy mail and lots of post from one lady in particular, Skye in Australia. Thank you to everybody.

Update 1st February 2015

Post Pals has been fantastic and Kai has very much enjoyed receiving the post. It has given him a new lease of life to wake up every morning.

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Amina Q

10 January 2015

Please note both Amina and Rida do not eat non-halal meat so please be mindful when sending post.

Story written 2015

Amina was diagnosed with CF at 12 months old after a long struggle. She was not tested in the heel prick, as it was introduced the year after. It began with a cough and ended with Amina being in intensive care for 3 months. We had no idea she had CF and neither did the doctors. After 3 long months of guessing, we finally got the diagnosis that changed all our lives.

Amina has taken CF in her stride. She is on 17 tablets a day not including the 30 odd Creon she takes daily. Amina also has nebulisers and daily physiotherapy. Amina has just been diagnosed with CF diabetes and now has insulin every night as well. Amina is also on overnight feeds to keep up her weight gain.

She has never let any of this stop her and participates in everything at school, even though she misses a lot of it due to having IVs for two weeks in hospital every three months. Despite all this she is always smiling.

Amina’s sister Rida is also a Pal and has her own page.

Update 6th June 2017

Amina had an extremely tough 2 week stay in hospital where the medication made her vomit too much. She spent the first 3 days sitting in the bathroom vomiting and lost 2 kilos. This is a nightmare for Cf kids. Weight is always an issue. As a result she’s been put back on overnight feeds and is unhappy as it feels like a step backwards. She worked so hard to get her weight up over the years, but they have said it will be reviewed in clinic and if it’s gone up then her feeds will stop.

Thank you for every last letter, card, postcard, picture, photo gifts big or small. They make more difference than ever. Thank you for Aminas smiles box and other gifts and cards sent to hospital and my things too. These are what get us through.

Update 30th April 2017

Massive thanks to the post pals team for the Extra Smiles and In Kind Direct. To Wendy, Bev, Bethany, Vicky and so many others. Without you I don’t know how we would see half the smiles we do.

Amina has admission for 2 weeks in the next few weeks. This will be hard as she hates it now and really gets upset. Not to mention Rida getting upset because I’m away with Amina. It’s harder as Amina is in isolation and can’t leave her room for 2 weeks.

Update 4th January 2017

Amina was in hospital in September for 2 weeks and again in December. The December stay was a huge battle as she was constantly being told different things about isolation. She ended up confined to her room for 2 whole weeks. This was traumatic for her as well as me. Isolation is awful. She stressed herself out so much, she lost 2 kilos in weight and refused to eat the hospital food. It was a struggle to get some weight on her. She’s beginning to acknowledge her CF now and it’s becoming harder for her to accept that she has to spend so much time away from school. This was her first admission from secondary school and she was very aware she was missing things.
We have another one planned for March but I’m hoping we can do home IVs.

I’d like to thank each and every person that sent letters, cards, gifts, big or small over the holiday period. Christmas was amazing and they had so many gifts. It’s overwhelming how much people who we have never met can care. Extra thanks to Vikki for this amazing page and group.

Update 4th November 2016

Amina is due for IVs again. The doctors want to hold out for as long as possible so they have said that she will need to be in by mid November. There is currently a bug on the ward and it is shut for admissions. She is coughing and having odd vomits as well. Her blood sugars are also playing up and it’s becoming difficult to get a balance with them and her feed. Thank you to everyone who has sent post to both girls. Anything no matter the size makes so much difference. The smiles are priceless.

Update 3rd October 2016

Amina is beginning to cough and is becoming aware that she may need an admission yet again. She really is not looking forward to this as it will be her first from secondary school and she’s worried about what her new friends will think. She also is worried about falling behind. It’s going to be a tough few months.

On a thank you note, I’d like to thank each and every person for all the amazing e mail, letters, notes, cards and gifts. Especially to Wendy Woo, Ginny and Jessica for their numerous gifts.

Update 5th August 2016

Amina is again going into hospital for 2 weeks of IVs on 15-16 August. She’s now allergic to 3 so even the doctors are struggling to find one which covers the bugs she is growing. The one they are thinking of won’t enable us to go home, so we will have to stay in for 2 weeks.This might be an issue as Rida will still be fragile, so will need me. She is gutted as it’s her aunt’s (my sisters) birthday on 18th August and she won’t be able to go. She has been having tummy pains and hard poos, so they think it may be the beginning of bowel problems.
Her medicines have been changed so she has now hit the ‘it’s not fair, I don’t want to take them’ stage.

Update 8th July 2016

Amina is very nervous as she is starting secondary school soon. She had an induction and loved it. She is coughing a little bit, but keeps getting tummy pains and is on the toilet a lot. This is taking its toll on her and she is getting tired easily. Unfortunately bowel problems come hand in hand with cf.

I would like to thank each and every single person for their gifts, letters, cards and e mails. The look on the girls faces is priceless and it wouldn’t be possible without you wonderful people. Thank you.

Update 1st June 2016

Amina has finally been given a date for her surgery which is scheduled for tomorrow at 1.30pm. The hospital have called in a surgeon from another hospital to help perform her operation. Needless to say, Amina is absolutely terrified and her family will be very relieved to have the surgery out of the way. Rida is struggling also, as she is very concerned for her sister, as she knows only to well about having operations and being in hospital.

Update 20th May 2016

We’ve just got back from clinic and have been told her port has snapped inside her chest, due to high risk of infection she now needs emergency surgery. We have been called back on Monday. Her feeding tube has also stopped working and she will need to have that replaced too. She’s terrified and has spent ages crying.

Update 4th May 2016

Amina is ok, but I can see some new Cystic Fibrosis related symptoms occurring. She may have a bowel blockage and this is causing her extreme pain, she is spending ages on the toilet and struggling. It’s so hard to watch and not be able to do anything. It is making her very tired and she never seems to have any energy. There is also something underlying as she is always cold and wearing many layers. She is due to have her feeding tube replaced, her port replaced and some hearing tests. On top of this she has her SATs coming up too. Thank you to Postpals for the butterfly project. They are really enjoying that! Also thank you for the make up and the dream catcher and jewellery gift from a pal.

Update 5th April 2016

Amina is in hospital having IVs. It’s very difficult, as she’s had another reaction to something and is covered in huge bruises all down her legs. This has really upset her. To make things worse, due to her bug she is isolated and not allowed to interact with others, or leave her room for 2 weeks. We are slowly getting there.

Update 3rd March 2016

On the 1st of Feb the girls unexpectedly and suddenly lost their grandad. This was devastating and we had to drop everything and catch the next flight to Pakistan. It was a very somber atmosphere and something they had not experienced before.

Amina is now coughing and awaiting admission. Now that she is older and more understanding she is beginning to rebel against her condition. It’s getting harder for her to accept that she is different and has to miss so much that her friends do. She is so brave and doing very well but losing her grandad has hit her hard.

I’d like to thank Ginny and Wendy and everyone else for all the post, cards, gifts, e mails, and massive thanks to Sarah Torode for the extra smiles boxes and the balloons.

Update 22nd February 2016

We just had to make an unexpected trip to Pakistan as the girls grandad passed away. It was so sudden and shocking, as he wasn’t even unwell. Now we are home, they are even more upset because they say granny is on her own. They are devastated and the extra smiles boxes really could not have come at a better time. They managed to put a huge smile on their faces. Amina has a hospital stay looming, so it looks like it’s another 2 weeks away….except this time to hospital. Massive thank you to Ginny, Wendy, Anne and the school in Cyprus for the presents. Also to everyone who wrote an e mail, letter, card etc, thank you all so much.

Update 21st January 2016

Amina is doing ok, but she is aware she will need surgery on her next admission and is very upset about that. It’s something that cannot be avoided, and we are trying not to dwell on it too much until the time comes.

On to the thank yous. I don’t even know where to begin! I would like to thank each and every single person for all their letters cards, gifts, e mail and messages.

Update 5th January 2016

Massive huge thank you to each and every single person that sent cards, letters, presents and even e mails. You guys seriously have no idea of the smiles you are making possible. Wendy is our regular sender, so a huge thank you to her and also Claire. There are so many I don’t know where to start.

Amina is doing well, although this never lasts long, but I’m hoping it will, as her hospital admission at the end of December was horrible.

Update 3rd December 2015

Amina is very unwell at the moment. She is coughing and vomiting and I really am trying to get her better, so she isn’t in hospital over the festive period. She’s very upset as well and crying a lot. Her sister Rida is very unwell too, so to sum up we have two very poorly and sad children at the moment. Saying this, I am hoping to take them both Lapland on Wednesday, so please send positive vibes they are well enough to go.

Update 2nd November 2015

We are in the middle of moving house and all the dust is getting to Amina. Poor child is coughing away again. We are hoping extra physiotherapy can shift any problems she has.

Rida is having an extremely rough time with her legs. The wounds are extensive and are requiring daily dressing changes. She is in awful pain, when the dressing change occurs but once it’s done…the smile is back.

Please note: the address where the post used to be sent has changed. This is now 24 Dawson Close, Woolwich, London SE18 7PL

Update 25th September 2015

Amina is very unwell at the moment. We are waiting on a bed in hospital so she can start her IVs. She’s coughing, vomiting and spiking the odd temperature, so hopefully we will get a bed soon.

It’s Rida’s birthday on 8th October and it seems more than likely we will be in hospital with Amina during this time. There’s no way around it and we will have to celebrate afterwards.

We have been given a new house so should be moving in the next week or so. I will be running backwards and forwards from the hospital to the house, as I want the girls’ room all decorated before Amina comes home, as a surprise.

Lastly, there is still no improvement on my hearing and life is very difficult at the moment.

Update 6th September 2015

Amina is unwell and is coughing. She is trying to put off going into hospital for more treatment as school has just started and she wants to be with her friends. However we are heading that way unfortunately, so it seems we will soon have (another) two week admission.

Thank you for the girls’ post.

Update 4th August 2015

We have been away almost all of July, but we are now home and Amina is due a hospital admission any day now. It seems like only yesterday she was in hospital and we still haven’t even recovered from our jet lag yet.

Update 17th June 2015

Fantastic news! We got a call late yesterday evening saying all results are clear and Amins can come home! So I went and picked her up last night and I don’t remember the last time I slept so well! So happy my baby is home!

I want to say a massive thank you to Sharon and the we love paper cutting group. Also to Post Pals for Amina’s princess game and the hair accessories lollipop which is now safely packed away to come on holiday with us.

I love you all lots for the smiles you put on my girls’ faces. Words can’t describe the meaning and importance of what you’re doing for these children!

Update 16th June 2015

Amina’s admission usually last two weeks but unfortunately she took a bad turn towards the end of it, by spiking temperatures of up to 40. She’s still in hospital and is now on day 17 with no news of when she’s coming home. She’s also in isolation. Rida is really missing her sister now as they have never gone this long without seeing each other. I just want her home now. Even I haven’t been away from her for this long.

Update 4th June 2015

Admission started on Saturday and poor Amina had an awful reaction to the medicines. She was covered in huge bruises. It was also a huge struggle to get a remote for the TV so I could use subtitles and I ended up staring at the TV with no understanding for a good five days, then on Wednesday I broke down and had to come home (with Amina) for the night. Now she’s gone back with daddy and I’m having a few days out, but will go back soon.

Poor Rida has been home and now wants Amina and mummy back home. However, now that I’m home she’s a bit better. Onwards and upwards, hopefully!

Update 30th May 2015

Gigantic thanks to Wendy for the banners to go in their room, and especially all the care and consideration she took to ensure they are suitable for the girls! Thanks also go to Post Pals for the Wreck Journal and thank you for Rida’s dolly which she adores!!

Update 26th May 2015

Amina is very poorly at the moment. She has an awful cough causing vomiting and on top of this she is getting nose bleeds, headaches and temperatures. We have been waiting for a bed to go in to hospital and start her IVABs since Thursday. Rida is well, but is upset seeing Amina unwell. Times are hard and frustrating at the moment and I still have no hearing.

Update 2nd May 2015

The girls are doing ok this month, although we have had some very bad news. I have unfortunately lost hearing in both ears and am now totally deaf. Doctors are baffled as it happened over 10 days. The girls are coping very well and at the moment we communicate via writing and a board. Amina writes what she wants to say and Rida just uses hand gestures. I am still having various treatments so hopefully it comes back. It has made things extremely difficult in terms of communicating with Amina and Rida’s medical professionals.

Amina is due to have a hospital admission for 2 weeks very soon. She is very upset as this will also involve an operation. Let’s hope it goes well. Amina is not looking forward to the admission and my loss of hearing has made things worse. She knows she will be answering most questions as I am totally unable to hear.

Update 5th April 2015

A massive thank you to everyone that sent birthday cards, letters and gifts. There are too many to name but you all know who you are and the smiles you put on Amina’s face are ones that money cannot buy.

Update 24th March 2015

I just want to say a huge, massive, gigantic thank you to each and every one of you who wished Amina a happy birthday, sent her a card or a gift! She had a fabulous party and we have one very pleased 10 year old!

Update 14th March 2015

A huge thank you to every single person who has sent Amina a birthday card and gift! The look on her face is priceless! Big thanks too for not forgetting Rida and making sure she’s also getting bits and bobs.

Thank you so much.

Update 25th February 2015

Rida had surgery on her hand on 10th February and 17th February. Then on 24th February she had another surgery and rather than taking 5 teeth out as planned, they took out 7!

My CFer, Amina, started coughing madly and so was admitted to our local too. Now that Rida’s had her final surgery though, we are waiting to be moved to Brompton. It seems Amina could be in hospital for her 10th birthday too!

Here’s my routine for at least the next two weeks. Take Amina in to hospital every night for 9pm to have 10pm IVs, go to sleep, have 6am IVs, wake at 8am to drop her at school, pick her up at 3pm to bring her to hospital for more IVs, go home, then come back at 9pm and do it all again!

Safe to say February has been a very hard month for us, but one thing the girls have had to look forward to is their post from Post Pals. We love you all!!

Update 1st February 2015

Post Pals is doing a fantastic job and whenever we get post the girls come running and say ‘mummy is there anything from Post Pals!’ Lots of love and praises to you guys!

Update 26th January 2015

I just wanted to say the girls have started getting post and I cannot tell you how happy they are! It was so nice to see them with such huge grins every time they got something!

We have a very challenging couple of months coming up. Rida has surgery on her hand on the 10th February and then needs to go back once every week for three weeks in order to be put to sleep again and have her dressings changed. She will also she will have 5 teeth removed.

During this time Amina has her IVs admission and it will be very hard to juggle both sets of admissions, especially as their respective hospitals are at the other end of the city from one another. Wish me luck!

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Rida Q

10 January 2015

Please don’t send hard or sharp things, feathery things that may damage her eyes, or anything that may damage Rida’s skin. Please note both Rida and Amina do not eat non-halal meat so please be mindful of this when sending post to them.

Story written 2015

Rida was born with RDEB (recessive dystrophic epidermolysis bullosa). This is a rare and painful skin condition in which the ‘glue’ that holds the skin together is missing. So any minor trauma or friction causes her skin to shear or a wound to occur. This is the same with eyes, ears etc. Rida is on overnight feeds as she cannot drink due to the dangers of aspirating caused by the EB. At birth she had no skin on her right leg, left heel, both elbows and a patch on her tummy. It’s all healed but her right leg is still extremely sensitive. Rida takes it all in her stride. She never lets anything stop her even though she’s in constant pain. EB affects the eyes the same way, it also causes blisters which we have to burst and dress. These can occur for no reason and do so on a daily basis. She often gets them in her throat causing her to vomit blood.

In January 2015 Rida is supposed to be having major hand surgery. This can take up to six weeks as she will have to go back to GOSH weekly for three weeks to have her dressings changed under general anaesthetic. Her fingers are fused together and they are operating to open the gap back using skin grafts from her back or thigh.

Rida has never ever complained and is always happy and smiling. She is an inspiration to everyone who knows her.

Rida’s sister is called Amina and is also a Pal with her own page.

Update 6th June 2017

Rida is heading towards more throat surgery. She had bloods done recently which was extremely traumatic and she screamed and cried. She also had an accident pulling the skin off her hand and wrist which had to be pushed back as it lifted off like a glove. This was very painful and took ages to heal as the blisters kept reoccurring. Currently her waist and left leg are very very damaged and need changing often.  She’s due a heart scan as she keeps getting chest pains and the doctors are concerned. Rida was upset when Amina went hospital as she is getting older and understands more that the family is split in half.

Update 30th April 2017

Massive thanks to the Post Pals team for the Extra Smiles and In Kind Direct. To Wendy, Bev, Bethany, Vicky and so many others. Without you I don’t know how we would see half the smiles we do.

Rida has a possible overnighter on 4th May and they will decide about more throat surgery. It will be her 5th. She’s due for hand surgery at the end of the year as well. It will be a difficult time as it’s a 6 week process.

Update 4th January 2017

Rida had surgery for her throat at the end of August just before Amina’s admission. This was her 4th throat operation and they told us it had closed to 4mm which is why she was struggling to eat and swallow.
Currently she has massive bleeding wounds on her right leg. These are so severe that they need changing twice a day. They are bleeding right through the dressings. She’s so brave that she never complains and it’s heartbreaking to see the size and extent of the damage on her little leg. Her waist is also very damaged. It’s also got extensive wounds, then yesterday she dropped a shoe on her foot and hurt her toe.
I’d like to thank each and every person that sent letters, cards, gifts, big or small over the holiday period. Christmas was amazing and they had so many gifts. It’s overwhelming how much people who have never met can care. Extra thanks to Vikki for this amazing page and group.

Update 4th November 2016

Rida has been having a very tough time. She has huge extensive wounds on both legs and massive sore areas on her waist. These are having to be changed daily and results in pain and tears. She also has wounds and dressings under each arm and these are fortunately healing. The waist wounds are very deep and bleed a lot. The cream used stings and she cries when it’s put on. There are wounds on her knees and behind her knees and also 1 ankle. This is all making daily life a struggle. We have recently been told she may have a heart problem and are awaiting an appointment from cardiology. She is also going to be referred for surgery on her hands as her fingers have fused quite far up. This is a 6 week process. Her eye is also starting to stick to her lower eyelid and may also require surgery. Despite all this she is always smiling and happy.

Thank you to everyone who has sent post to both girls. Anything no matter the size makes so much difference. The smiles are priceless.

Update 3rd October 2016

Rida currently has a very sore waist, its dressed and bandaged but still painful. She almost took a tumble down a flight of stairs but caught her balance in time. She still twisted her ankle and has a blister on her foot preventing her from running too much. She also has a sore leg and it’s always needing to be re dressed which she hates. On a thank you note, I’d like to thank each and every person for all the amazing e mail, letters, notes, cards and gifts. Especially to Wendy Woo, Ginny and Jessica for their numerous gifts

Update 5th August 2016

For the past 5 nights she has been waking at random times and started to gag, retch and dry heave. She’s saying there is a blister in her throat as these are the usual symptoms. However after almost 2 hours of this and exhausting herself it wore off and she fell asleep. This was Monday night. The same thing happened on Tuesday. Then again on Wednesday when she woke at 3.30am and was up spitting whilst gagging and retching until 5am. There was nothing we could do except hold her and console her. After speaking to her nurses they think she not only needs an emergency oesophageal dilation but also its a stricture that is causing this. When she lays down, pressure on the oesophagus is causing this. Needless to say it’s a nightmare to watch. She’s been booked in for emergency surgery on Tuesday.
Along with this her lower eyelid was slightly attached to her eyeball due to an old blister, this seems to be spreading so we could be looking at eye surgery as well.
She is refusing to sleep due to fear of the waking episodes. She hasn’t eaten for 5 days and is surviving solely on her overnight feeds.

Update 8th July 2016

Rida has had two accidents at school. The first time she tripped over a drain and wounded her leg. The following day another child tripped over her foot causing a huge blister underneath her foot. She is currently unable to wear shoes or walk for long periods of time and is in pain. Then at 2am she woke crying as she had a blister in her throat. She spent an hour gagging and retching while we tried to get her to eat ‘sharp’ food in the hope it would burst. Well over an hour later it burst and she did a blood vomit, then fell asleep as she was exhausted. The following day I went to bath her only to discover her vest stuck to a huge wound under her arm. I had to slowly rip it off and it was horrendous … she didn’t even cry, she was so brave.

I would like to thank each and every single person for their gifts, letters, cards and emails. The look on the girl’s faces is priceless and it wouldn’t be possible without you wonderful people. Thank you.

Update 20th May 2016

Rida has just informed us of a huge blister on the back of her left leg. It’s been burst and dressed. She’s now in pain as she cannot straighten her leg and is crying, also she’s upset as she knows about Amina and doesn’t want her to go to theatre.

Update 4th May 2016

Rida is having problems with wounds on her neck. They are recurring and unfortunately as they are in a strange area they cannot be dressed. Her hair gets stuck in the wound and has to be pulled out. As you can imagine this is very painful, yet she never complains. She now has dressings on both legs as her other leg is also damaged. Surgery also looks impending for her throat – for the 4th time – as she’s choking on food again.Thank you to Post Pals for the butterfly project. They are really enjoying that! Also, thank you for the make up and the dream catcher and jewellery gift from a Pal. Thank you for Rida’s stitch soft toy … even though she was afraid of it at first!

Update 5th April 2016

Rida had a scare recently; she became very unwell and ended up in A&E. It was a very frightening time as her head was effectively ‘leaking’ some sort of fluid, to the point where I was wiping it away for hours on end. It slowly (over 2 days) stopped. She then got a lump on the back of her neck which the doctors said may be cancerous and needs to be checked. Needless to say, our world stopped spinning. We went to Great Ormond St. and had it checked. Turns out it was all a huge infection and the lump was a reaction to the infection. Phew!

She just took it all in her stride. Presently she has a massive raw patch on her bottom, and she had a blister under her arm the size of a large marble. Yet she hasn’t complained or cried once.

Big thanks to Wendy, Claire, Ginny and everyone else. Also to the extra smiles team for the cake!

Update 3rd March 2016

Rida’s skin is sore on her elbow and left leg. There seems to have been an infection because the wound became filled with yellow stuff. It was hard watching her go all quiet and subdued, which is what she does when in pain. It’s now healing but as with her sister, losing her grandad has hit her hard and she is finding it difficult to accept she won’t see him again.

I’d like to thank Ginny and Wendy and everyone else for all the post, cards, gifts, emails, and massive thanks to Sarah Torode for the extra smiles boxes and the balloons.

Update 22nd February 2016

We just had to make an unexpected trip to Pakistan as the girls’ grandad passed away. It was so sudden and shocking as he wasn’t even unwell. They are devastated and the extra smiles boxes really could not have come at a better time. They managed to put a huge smile on their faces. Rida is ok, she has some really sore areas but was too sad about losing her grandad to complain. It was horrible seeing her so upset. Now we are home they are even more upset because they say granny is on her own. Apart from this, onwards and upwards. Massive thank you to Ginny, Wendy, Anne and the school in Cyprus for the presents. Also to everyone who wrote an email, letter, card, etc. thank you all so much.

Update 21st January 2016

Rida is very sore. She has large wounds on the back of her leg and is having dressings done almost daily. It’s heartbreaking to watch. How she isn’t screaming in agony is beyond me.

Onto the thank yous. I don’t even know where to begin! I would like to thank each and every single person for all their letters cards, gifts, emails and messages.

Update 5th January 2016

Massive huge thank you to each and every single person that sent cards, letters, presents and even emails. You guys seriously have no idea of the smiles you are making possible.
Wendy is our regular sender so a huge thank you to her and also Claire. There’s so many I don’t know where to start.

Rida has hurt her foot – again. And yesterday she got too close to the DVD player, head butting it and taking a bit of skin off her forehead. Then today she got hit in the face with Iron Man whilst playing with her sister and now has a nasty wound on her chin. Not a good way to begin school. She has a big appointment coming up and may need some help in the form of foam or wedge-y type things in her shoes to bring her feet out as they are starting to turn inwards, causing her to hunch. Not sure how she will react to this.

Update 3rd December 2015

Rida is having an emergency operation tomorrow as her throat is closing up due to scarring. She was okay about it, but seeing her sister Amina upset has upset her too and now she also cries at the smallest thing. To sum up, I have two very poorly and very sad children at the moment. Saying this, I am hoping to take them both to Lapland on Wednesday, so please send positive vibes that they are well enough to go.

Update 25th September 2015

Rida has hurt her foot quite badly, and she also ended up in A&E with chest pains a few days ago. The chest pains were viral and are now a little better. Her foot is slowly healing, but she has had a lot of time off school already. Her ear is also sore and there may be an internal infection. She’s already had one infection.

Amina is due a hospital admission, and the worst part of all this is it’s Rida’s birthday on the 8th of October and it seems more than likely we will be in hospital with Amina during this time. There’s no way around it and we will have to celebrate afterwards. On the upside, she’s looking forward to seeing how many cards she will get from her Post Pals and if it will be more than Amina!

We have been given a new house, so should be moving in the next week or so. I will be running backwards and forwards from the hospital to the house, as I want the girl’s room all decorated before Amina comes home, as a surprise.

Lastly, there is still no improvement on my hearing and life is very difficult at the moment.

Update 6th September 2015

Rida had an appointment recently and was told she had an infection in her wound that could be potentially dangerous, so she’s now on medication. She also had a blood test done and had to be held down by three people, which was very distressing. The physio has also told us she will need special soles made to put in her shoes as her feet are bending inwards. This should fix the problem over time.

Thank you for the girls’ post. Please can I ask that Rida isn’t sent any small plastic confetti in cards though, as there was a bunch in one of her letters and as she opened it, it hit her in the eye, resulting in a damaged eye. Thanks again.

Update 6th July 2015

Both girls are now home but they are slightly struggling with the heat due to their illnesses. It’s particularly hard for Rida as she has all her dressings on and then her clothes on top. She also isn’t allowed to drink anything so that makes it even worse. I hope it doesn’t get too much hotter.

Thank you to Wendy for the sticker books and also to the paper cutting group. I got a beautiful frame and so did Rida. Big thanks to Emma Jenkins for my frame and gift, it made my day!

Update 18th June 2015

Rida is in a great deal of pain at the moment. Due to summer weather, her dressings are making her itch more than usual and causing new wounds. She has a big sore on the back of her left knee which means she has been unable to stand straight for almost a week now. It heals and then she scratches and we are back to square one. It’s not always easy to bathe her as bathing can be painful and we are running out of distractions. At the moment I’ve been doing her dressing 4-5 times a week, which take up to 1-2 hours at a time and is extremely hard work, as you can imagine.

Hopefully now Amina is home from hospital we can concentrate a bit more on Rida. I don’t know if I’m coming or going at the moment, and Ramadan also started today so we are now fasting as well.

I wouldn’t change my girls for the world. My beautiful princesses.

A massive thank you to the ‘we love paper cutting group’ for Rida’s frame. Thank you for all our post. I love you all lots for the smiles you put on my girls’ faces. Words can’t describe the meaning and importance of what you’re doing for these children!

Update 16th June 2015

Amina’s on day 17 in hospital with no news of when she’s coming home. Rida is really missing her sister now as they have never gone this long without seeing each other.

Update 30th May 2015

Gigantic thanks to Wendy for the banners to go in their room, and especially all the care and consideration she took to ensure they are suitable for the girls! Thanks also go to Post Pals for the Wreck Journal and thank you for Rida’s dolly which she adores!!

Update 26th May 2015

Rida is well at the moment but is upset seeing Amina so unwell. Amina is waiting to be admitted to hospital for IV antibiotics.

Times are hard and frustrating at the moment and I still have no hearing.

Update 2nd May 2015

The girls are doing ok this month, although we have had some very bad news. I have unfortunately lost hearing in both ears and am now totally deaf. Doctors are baffled as it happened over 10 days. The girls are coping very well and at the moment we communicate via writing and a board. Amina writes what she wants to say and Rida just uses hand gestures. I am still having various treatments so hopefully it comes back. It has made things extremely difficult in terms of communicating with Amina and Rida’s medical professionals. Amina is due a hospital admission soon and my hearing loss is going to make things a lot harder.

Update 5th April 2015

I can’t tell you how happy little miss has been because all the well wishers have ensured she hasn’t been left out as it was Amina’s birthday recently. However she received so much stuff as well she though it was her birthday too!

Update 25th February 2015

Rida had surgery on her hand on 10th February and 17th February. Then on 24th February she had another surgery and rather than taking five teeth out as planned, they took out seven!

My CFer, Amina, started coughing madly and so was admitted to our local too. Now that Rida’s had her final surgery though, we are waiting to be moved to Brompton. It seems Amina could be in hospital for her 10th birthday too!

Here’s my routine for at least the next two weeks. Take Amina in to hospital every night for 9pm to have 10pm IVs, go to sleep, have 6am IVs, wake at 8am to drop her at school, pick her up at 3pm to bring her to hospital for more IVs, go home, then come back at 9pm and do it all again!

Safe to say February has been a very hard month for us, but one thing the girls have had to look forward to is their post from Post Pals. We love you all!!

Update 1st February 2015

Post Pals is doing a fantastic job and whenever we get post the girls come running and say ‘mummy is there anything from Post Pals!’ Lots of love and praises to you guys!

Update 26th January 2015

I just wanted to say the girls have started getting post and I cannot tell you how happy they are! It was so nice to see them with such huge grins every time they got something!

We have a very challenging couple of months coming up. Rida has surgery on her hand on the 10th February and then needs to go back once every week for three weeks in order to be put to sleep again and have her dressings changed. She will also she will have 5 teeth removed.

During this time Amina has her IV’s admission and it will be very hard to juggle both sets of admissions, especially as their respective hospitals are at the other end of the city from one another. Wish me luck!

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