Samuel M

26 February 2016

Please do not send any Dairy products to Sam

Story written 2016

In the summer of 2009 Sam was born 14 weeks premature, making him a micro preemie.

He spent 15 weeks in the Neonatal Intensive Care Unit before going home on oxygen. However, this unfortunately wasn’t the end of our hospital life but, in truth, turned out to be the beginning of our new life.

Sam spent 2/3 years of his early life in and out of hospital, only managing a few days with us as a family before being re-admitted again. After many years of illnesses, operations and having had the ‘talk’ with consultants, it was discovered that Sam had a immune disorder. His immune system didn’t remember an illness so it was like having a newborn baby all the time. Sam’s body also didn’t know it was poorly and so didn’t fight off any bacteria or viruses.  Therefore, he remained on constant IV antibiotics for years, which we learnt to do at home.

In 2012, Sam had 60% of his right lung removed due to scarring caused by constant infections, and in the latter end of 2012 Sam had a sibling bone marrow transplant from his older brother.

Sam remains a very poorly boy, on constant oxygen, IViG (which is an artificial immune system), a ventilator at night time and many, many meds. However, Sam is a very happy, cheeky young man with an adult sense of humour. Sam will lighten up any situation and just has the biggest heart I can know in a child. His daily life is filled with physio and medical intervention, yet he never complains or asks ‘why me?’.

We do not know what the future holds for Sam, but we know that Sam will give it his all regardless of how he feels inside.

Update 10th November 2019

Sam’s had a rough patch of it recently which all started with D&V about 8 weeks ago. Because of this he’s lost weight which in a skinny child isn’t great news. He’s had many tests to see what’s going on but so far no real answers. The best the team can come up with is left over from the D&V but can’t be sure. 

About four months ago we found out by pure chance that Sams blood sugar levels are a little out the norm. He goes both high and low but not enough to be treated, just enough to cause symptoms. We recently had the 24hr starvation test done and to say it was hard is an understatement but Sam completed it 🙂

Sam has also been in a lot of pain over the last six months in his legs and hips due to the scoliosis and leg difference. Sams wedge in his shoe is being increased with the aim to place an external wedge on his shoes which will hopefully level Sams hops out a little decreasing the pain. 

This has all had a huge effect on Sam emotionally and he’s had moments of struggling mentally but we’re working on this and it helps. He’s also missed 60% of his school year so far which isn’t good for him. We are managing to keep him current by working on it at home but nothing beats the social side of school. 

Update 2nd April 2019

Sam’s health has been up and down over the last few months, mainly from a gut perspective landing us in hospital a few times. His weight has been declining and his intestinal track is either way too fast or stops all together. We are awaiting a long stay in hospital to try and sort this out. 

Chest-wise, Sam’s been really stable and managed the last winter with very little issues which is unheard of for Sam. He stills tires easily and relys heavily on medication, but we finally have the right combination of drugs. 

Sam’s immunology bloods remain just under the normal level even with treatment but it’s enough to allow him to remain safe outside. 

Our main concern is Sam has started to develop ‘fuzzy’ episodes where he can’t move or talk, but can hear what’s going in around him. These episodes are becoming more frequent but we don’t know what’s causing them. 

Emotionally Sam’s doing much better and has accepted his limitations but has started to find ways around most things. This in itself has been the best gift ever as it’s been hard watching him be sad and know we can make it all better. The post he receives really helps lift his spirits and makes him smile. He especially likes the cards that come with personal info like cats’ names etc as he can relate. 

Update 9th September 2018

Sam has had a difficult few months and has struggled with many illnesses from shingles to tummy pain. We’ve been struggling to get his stomach go fully function again and his bowels are really playing up. Alongside this Sam has been having weekly (if not more frequent) episodes of not being able to move or talk. We have spoken to his team about these and we are awaiting a neurologist input where we will hopefully be able to get to the bottom of what’s going on. Until then we have to just support Sam through these episodes as there’s not much else we can do.

Chest wise Sam has not had a great summer and at times he’s struggled to even climb the stairs. Again this was mentioned to his team and some tests were performed and we will find out what the plan moving forward will be at our next clinic appointment.

As Sam had a rough summer break his moods not been the best but he’s tried to stay as upbeat as he can. We are hoping being back at school will help with this and Sams started the local youth group which he’s really enjoying.

Update 25th February 2018

Sams struggled for a few months now with pain, pain all over from muscles to tummy spasms to headaches. The drs are trying hard to find out why, what we’ve found out at the moment is that Sams hamstrings are tight and he needs to wear his glasses full time. He’s started horseridding in the hope to help his muscles and give him better core ability.

Since Sams stomach gave up in December it’s been really hard to get it going again. We are now venting his gastro button daily as he appears to be producing a lot of air which causes some of his pain.

We have an mri coming up to see if we can dig any deeper for clues as to what’s going on. For now we carry on with the pain relief and horse ridding lesson.

Update 23rd November 2017

Sam’s had a very difficult few months and in truth no one is sure what’s going on. He keeps having episodes of losing all colour, getting bad headaches and generally feeling unwell. These last anything from 30mins to 2hrs. His other issue is his leg is still giving way so he’s falling over frequently. Again no one is sure as to why as structural damage has been ruled out, along with cardiac. We are now awaiting a neuro input to see if this is the cause.

Sam’s also been suffering from a sore throat that he describes as his throat closing in on him. Again we are but guessing what’s wrong, though we do know that Sam has had  pseudonymous in his sputum samples so he was treated with IVs. Since stopping the antibiotics, Sam has noticed an increase in symptoms, along with an increase in mucous plugs which are becoming an issue again. We are hoping to go to theatre shortly for his team to have a look down and see what’s going on.

Since his birthday Sam has been struggling, mentally with his conditions. We have to remember he’s a 9yr old stuck in a 90yr olds body. He wants to be able to run around and play with his friends. In his words ‘I just want to be normal’. It’s so hard to help with this as I can’t change his medical conditions or even say there is an end to it all because there isn’t. We have however arranged for Sam to talk to someone who specialises in this type of treatment and hopefully bring Sam’s mood back up again.

Update 30th August 2017

Sams has had a difficult few months and we’ve had to ask our consultant to have a look at him earlier than his six monthly review. From an immunology point of view sam is stable and actually his numbers are the best they’ve ever been. However he had to overcome his needle phobia for this and I’m glad to report that after a few months of work Sam now just lets us get on with it and doesn’t even flinch.

Its the rest of his issues that are not going great. Sam has been suffering from a lot of symptoms that are thought to be connected to his cardiac problems and whilst the Drs have tried to not treat with medication they now feel they may have no choice but to start them. So we are waiting for extra tests to be performed as the problem with cardiac meds is that once you start them its hard to stop or reduce so it needs to be the last resort. Its hard watching Sam when he’s sat on the sofa in pain and looking really drawn in the face, knowing there is very little we can do to help him.

Sams other issue is his knee, recently sam has been falling over a lot for no apparent reason so again we asked his Dr to have a look. She in turn asked physio to give sam a quick once over and its a good job she did as it turns out that sam has a potential torn ligament in his knee. He has been walking around with it for some time and this is the reason his knee has had trouble locking. We have been given exercises to do and awaiting a review from ortho as to where we can go from here as he’s already covered in bruises.

Update 1st May 2017

Sam has had a really difficult month, since we found out that Sam’s dysmotility is throughout his intestinal tract we have been trying different treatments to help in making him clean during the day. He started on a new procedure called the peristeen however this caused massive spasms and even an infection (needing IV antibiotics) as all the stools whizzed through his tract and his body wasn’t use to it as he’s normally slow. Sam managed to lose 1.2kg in a week which is a lot for someone like Sam that has nothing to lose. We then moved onto daily enemas which were going great for a week, however they then went on to irritate his bowel and started to strip the lining causing him to lose lots of mucous from his rectum. So he’s currently on a break for the weekend and we will try something new from Monday. We can but hope this works as we are slowly running out of options before we head to surgery.

Sam’s found it hard emotionally over the last month as the spasms are so painful and it was really getting him down. We went to Alton Towers but the trip was dampened by pain and generally feeling rubbish. This was such a shame as we had been planning this trip for four months.

However, he still amazes me with the acceptance of it all and how he trusts us enough to keep trying. He did find the not having any accidents a real lift and this boosted his confidence.

Sam’s lungs have behaved themselves this month and his SCIG is going great and keeping his levels steady which is amazing news. Sam is so good with it all as it can be painful and uncomfortable even after the treatments finished, for up to 24hrs. But he just takes it in his stride and has a quiet evening watching TV or playing with his ponies on his bed.

Big news this month is we got Sam a new puppy called Bella. She’s raised Sam’s mood loads and he even takes her for a walk on his wheelchair. This is great as not only has it been so beneficial for Sam but it gets Bella used to the chair without trying to escape or get run over.

In the next month we are hoping to take up swimming as a form of physio and of course as Bella can go further and further, we can go on family walks.

Update 2nd February 2017

This month has been full of hospital stays, appointments and procedures, some very unpleasant procedures.

We have, however, gained a lot of answers and insight in to Sam’s illnesses. Unfortunately the answers have just opened a whole new set of problems with yet even more unpleasant procedures to come. We found out that the dysmotility that Sam has goes right through from his oesophagus to his rectum. GOSH are currently unable to move forward with the treatment needed, however UCLH are helping adults with similar issues so our team are seeing if they can get Sam over there to be seen. All medical science moves on with volunteers so why not Sam? 🙂

Sam has found all this extremely hard and for the first time ever Sam cried on his way to the treatment room. He’s normally so open and compliant with what we ask of him that it broke my heart to see him cry and not be able to help at all. The tests had to be done for us to get answers, so all I could do was hold his hand and try to get him through.

We had our 6-monthly respiratory review and are changing a few things in the hope of stabilising Sam a little more but should in the long run mean Sam has more ‘well periods’.

One of the major changes this month has been that Sam changed from IViG to SCiG. This is a massive step for Sam medically and emotionally as up to now Sam’s had a huge needle phobia (due to the amount of cannulas he had before we got his central lines) but has had to overcome this because SCiG means two small needles have to be placed into his legs every 2 weeks. The reason for the switch is that Sam is now getting older and this will mean we can give his immunoglobulin at home. He did amazingly well and we couldn’t be prouder, not only did he accept the needles, he allowed me to place them rather than the nurse.

So all in all January has been a big step towards Sam’s independence and future treatments.

Update 7th January 2017

Sam’s been very much up and down over the winter months, causing us some worry. All aspects of his illness has been effected from gut, lungs, heart rate, immunology, the works.

Sam’s going to have a busy month of tests and procedures and the outcomes are very much unknown, but will hopefully mean we can move forward and allow Sam to regain some control. Some of these tests are unpleasant and to be honest we have put off asking the doctors for help for this reason but as Sam grows its not appropriate that we ‘ignore’ the issues anymore but have to face them head on now. Sam is, as ever, facing them with a smile and sees the positive in it all.

Sam’s lungs were giving us a lot of grief just before Christmas with a lung function of just 68%, however a round of IV antibiotics has increased his exercise tolerance, so now we are waiting to see what happens over time and if whatever caused the decline returns.

In January, Sam will be starting the transition from IViG to SCiG as the doctors feel Sam’s immunoglobulins will now be for the foreseeable future and its always better to do things at home than having to go to hospital. This will be huge for Sam as he has a massive needle phobia and the idea of stabbing himself in each leg weekly is not high on his list of things to do. We’ve had a practise run and this went well so we are optimistic, however we have told Sam this is 100% his choice.

So January will be very busy and productive for us all and will be a big step in Sam’s independence and medical future.

Update 21st October 2016

Sam’s having a settled period regarding his chest and whilst he had a temp not so long back he has remained relatively well 🙂

Unfortunately we can’t say the same for his gut. It’s so up and down at the moment and whilst we have put off gastro suggestions for certain interventions I’m not sure we can for much longer. We are trying a long, long course of oral antibiotics in the hope to get get rid of any bacterial overgrowth that may be causing the issue. This will not cure any of Sam’s gastric issues but will hopefully make things a lot better day to day.

Sam remains oblivious to it all and just gets on with things that are thrown at him. He started in yr 3 this month and struggled with full days, but actually loves it so much he has been begging us to go in for half days. So after a month of half days we are trying full days again, with the intention of staying till at least 12:00. I never thought yr 3 would affect him this much and it came as a bit of a surprise to be honest.

Thank you to everyone that sent Sam a birthday card/gift, he read each one and was so excited when the post arrived. We managed to go ‘glamping’ which he just LOVED and said it was the best birthday ever lol. Phew, as it was not easy to set up when a child is on a vent.

Update 13th August 2016

Sam saw Gastro at Great Ormond Street this month and they are confused as to why his tummy is still playing him up. We are to be admitted for day testing on his hair (strange, I know) to see how many bugs are growing in his stomach and which ones so we know what antibiotic to use long-term. Sam will also have a special glucose test done which measures different aspects of his blood sugars. It’s all very in-depth and scientific.

Sam’s chest has been amazing this month and he’s managed to even climb a waterfall when we were visiting friends in Ireland.

However Sam appears to have a new problem. About once a month for the past year Sam has developed a petechiae rash on his torso. In recent months this is now a weekly thing and he’s bruising more easily. His platelet counts are all good though, so the doctors have requested a breakdown clotting and if this is ok we will be talking to haematology.

Sam finished infants school this month which is a massive achievement and he can’t wait to go up to big school.

July’s monthly project was very much appreciated during his routine 3 weekly hospital trip for meds. Kept Sam busy and it’s now hanging from his bedroom window. Sam takes the time to read every single postcard and letter that comes through and he enjoys hearing about how different people live.

All in all Sam’s had a good month and he’s looking forward to his birthday.

Update 7th July 2016

Sam is having a stable-ish period. The permanent oxygen has benefited him no end and he’s able to enjoy day to day activities without getting out of breath.

His tummy, however, is proving a bit more of an issue. He stopped his gastric antibiotics 4 weeks ago and already we are back to where we were months ago. So it looks like long term antibiotics are what’s needed. We are seeing GOSH next week so hopefully they will come up with a better plan. It’s such a shame as he was just starting to put on weight and was looking good for it, now he’s lost all that again.

Sam’s brothers are always so pleased to receive something in the post and makes them feel special. Even Jordan who’s 15 gets excited and helps his brothers read their mail too.

Update 3rd May 2016

Sam has, once again, been having a difficult month. His stomach is still a source of concern and he on a lot less calories than he should be. Therefore, he has lost a lot of weight and now most of his bones are sticking out. So, in an attempt to get on top of this, Sam is going to have to go back into his feed pump and start a new medication in the hope this works.

This, however, brings a new problem as Sam is 24/7 dependent on oxygen, which he carries on his back. But with only one back and two backpacks we are having to come up with new ideas on how to manage this.

Sam’s lungs have been up and down and at times he’s needed a lot of extra support when sleeping.

We are hoping next month’s update will bring good news, but please do know that each and every email/card/letter is read and brings a smile. Each gift is eagerly opened with excitement and happiness. Post Pals has brought so much to Sam that the first thing he asks now is ‘has the postman been?’.

We are learning all about the countries from which the letters arrive from and how far they have had to travel.

The other boys have received a couple of gifts too and they were so pleased to have something just for them. They ripped open the envelopes and intently read the messages inside. So thank you from each one of us.

Update 3rd April 2016

Sam’s had a difficult few months and had to deal with a lot of medical ups and downs. He’s tiring easier and his gut gave up for three weeks straight and even now he’s not back to normal.

We’ve only been part of the Post Pals family for a month and I really can’t tell you the difference it has made. He’s so excited every day when the post arrives and we sit and read every single one that arrives. We have even bought a world map to stick on his bedroom wall and marking off all the different places a card/gift arrives from. It’s teaching Sam so much more than we ever thought.

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Brooke H

26 February 2016

Story written 2016

Brooke was born on the 18/01/08 at 7:27am, as soon as she was born the midwife noticed she had a distended stomach and she was taken to the special care baby unit. However, things quickly turned serious and within a few hours we were waiting for a bed at any intensive care unit that had a bed. The only hospital that could take her was Sheffield Children’s Hospital. The following day Brooke was transferred via Embrace to there. When we were there nobody could understand why my tiny baby had not pooed and why her stomach just kept expanding. She had test after test but still nothing showed up. Finally at four weeks old she was rushed to surgery as an emergency case, where they discovered she had a perforated and twisted bowel. She had to have 10cm of her bowel removed and had an ileostomy fitted,this meant having to have a stoma nurse come in daily to ICU.   At five weeks old she was diagnosed with cystic fibrosis, this also happened to be my other daughter’s fifth birthday. At 11 weeks she had the ileostomy reversed. However, this did not stop Brooke from getting infection after infection, and she remained in ICU for five months, before finally being allowed home to her family. Throughout her stay she was hooked up to many machines, as she was also nil by mouth for four months.This was due to all the infections, surgery procedures and diagnosis of CF she had been through, so she needed lots of medication to keep her alive.

Since leaving hospital Brooke has suffered with an eating disorder, struggles to gain weight (currently weighs 2 stone 10lb at 8 years old) She also takes many daily medications, nebulisers, has physiotherapy and still after all this fights life like every day is her last. She is such a strong girl who enjoys every aspect of life.

Update 7th February 2021

Brooke started Kaftrio in October and the improvement is amazing- lung function is up 10%, her weight was up 1/2 a stone and her chest is clear! 

It was thought she had IBD but after further investigations it became clear that the thickened bowel wall found last year is actually just Brooke’s bowel and it should not cause any problems, the problems with her bowels are CF related – so that was a relief. Hope you are all staying safe, and thank you for all the cards/letters/gifts. You are all special people. 

Update 7th June 2020

We are still waiting for the results of her last set of tests for the gastro team to confirm the bowel issue. The Nephrocalcinosis department have confirmed they are happy is she is stable and the Cystic fibrosis team are happy with lung function, weight and over all with her cf at the moment. We are happy with the news this week regarding the amazing new drug Kaftrio hopefully being available to Brooke within a few months!! 

Brooke is not back at school until September but she seems happy with being at home and has handled lockdown and shielding extremely well! 

I hope you all are keeping safe and fingers crossed normal times are not too far away. xx 

Update 21st April 2020

Brooke is doing ok considering she’s an active child with the lockdown, health wise she’s grown pseudomonas again, so is on another 3 month treatment, which sucks! 

We are also waiting for gastro specialist appointment regarding the bowel issue that flagged up during the Nephrocalcinosis investigations, it is thought that maybe Brooke also has Crohn’s disease as well as Nephrocalcinosis and cystic fibrosis, which also sucks!! 

Thanks for all the post guys- and please stay safe during these uncertain times. xx

Update 28th November 2019

Where to start? Brooke is having a tough time lately, having recently been diagnosed with Neprocalcinsosis (can’t spell it ) kidney calcification, we also got tildes after a scan 2 weeks ago she has gallstones however these should pass without any help, during the scan they also found the lining/wall of her large intestine is thickening so this needs further investigation and then to top it off yesterday we got the call to inform us she has pseudomonas!! Which is not great for her lungs!! She was extremely upset yesterday as I think she’s starting to understand how serious her conditions can be!!

Thank you for your post it really does make her smile xxxx

Update 2nd October 2019

So the kidney specialist has confirmed Brooke has Nephrocalcinosis in both kidneys not just 1 as first thought. They think it may have been caused by the TPN she was on as a newborn but that can’t be confirmed. It’s a life long condition that needs to be checked every 6 months and there’s a few things we need to try and balance, as some of her CF treatments can worsen the Nephrocalcinosis, but obviously without the CF stuff it’s life-threatening so we need to try balance everything so that both conditions don’t cause anything for each other (confusing I know). Thankfully no medication is needed yet as it’s been found early enough to prevent it from worsening. Also instead of putting Brooke through the same sort of tests twice, the two consultants are going to do them all at the same time and use the same results, probably her CF annual tests!!! So that’s a bonus, my crazy child likes to mix things up that’s for sure.

Update 1st October 2019

We are just waiting to see the new specialist regarding the Nephrocalcinosis. In regards to her Cystic Fibrosis her weight is up, height is up and lung function in the 90% … go Brooke

Update 2nd September 2019

Brooke has recently been diagnosed with Nephrocalcinosis, so as well as battling CF she has this to contend with, as well as starting high school – but in true Brooke style she is taking it all in her own stride.

Update 10th August 2019

Brooke is having a great year so far, with some amazing weight gains and growth. The consultant actually said “in 11 years she’s weighed 3.5st, yet in 6 months she’s put a stone on, its amazing”

Brooke is now looking forward to the next adventure in her life in September – high school 

Update 16th June 2019

Brooke has had an awesome year so far health wise actually putting on a ridiculous amount of weight for Brooke anyway.

Update 10th February 2019

Brooke has had quite a year battling CF, but she’s a tough cookie who takes it and deals with it!! Her weight took a drastic drop over Christmas due to having the stupid flu bug thing, so we are fighting hard to try get some back on.She’s also suffering with a lot more coughs and bowel problems than normal, but again we’re just battling through!! She’s still in high spirits and continues to take part in her out of school activities!! Thank you for all the cards and gifts, much love.

Update 2nd November 2018

After a tough year with Brooke’s bowels ,yesterday was a shock at clinic, we had the best ever clinic with weight and height up ( now up to 4 stone at nearly 11 years old) and best ever lung function test at 97%!  We are still not out of the woods regarding her bowels, but we have had the best most positive clinic, which is an amazing feeling.

Update 15th September 2018

Brooke is struggling – this year has really tested her with her lungs and bowels, however she is a fighter and refuses to let CF beat her.

Update 18th July 2018

Brooke has a tough year with her CF, she’s been in hospital again due to a blocked bowel, luckily no surgery was needed, however plenty more medication unfortunately.

Other than that she’s doing good. Thanks for all your beautiful gifts/cards and letters

Update 8th January 2018

Brooke’s condition has really started to show its full extent this year- having her lung function up and down all year, taking longer to clear coughs, having blocked bowels, losing weight drastically and breathlessness more often. Brooke is starting to understand a little more now and for a 9 year olds parent it’s heartbreaking to listen to her say she just wants to be normal. Her daily medication is more than an average adults monthly intake which is hard for us to see her struggle with her “normal routine” when all she wants to do is get up and play.


Update 2nd October 2017

Brooke is ok at the moment- she had her first breakdown this week about having CF, lots of tears about her wanting to be “normal”!! This was truly heartbreaking for me. Her health is a bit hit and miss at the moment – needing treatments more and becoming more breathless after activities. We will be getting her checked at next clinic in next couple of weeks.

Thank you for all letters and gifts Brooke and siblings have received.

Update 22nd August 2017

Brooke is doing really well especially after the last couple of months, she’s got her lung function up into the 80’s again which is super considering the lung damage that was caused from that awful infection.

She’s continuing her activities and annoying her siblings this summer and is looking forward to going into year 5 in two weeks, thank you for all the post and gifts including a big thank you to the extra smiles team.

Update 5th June 2017

Brooke’s had a really tough time for the last couple of months, for the first time in 6 years CF took a grip and she is struggling to get rid of this infection in her lungs, it’s already caused some permanent lung damage to the right lung, which is really disheartening for us all.

She’s been in and out of hospital for about 5 weeks and is currently still on two lots of IV medication 3 times a day, as well as intensive physio sessions plus 3 x nebuliser a day. It’s taking its toll on the family but Brooke being Brooke is just taking in her stride and plodding along, even going to school and trying to be normal with her long line in. All in all a tough few months, but we won’t let CF beat us! Thank you for all the gifts and cards and an even bigger thank you to Post Pals Extra Smiles!

Update 1st May 2017

Brooke has started to feel the effects of CF recently – having a cough that won’t go, trying different antibiotics and back to twice daily physio and nebulisers. We’ve had clinic and the consultant says it’s the start of the decline. We were also shocked to discover that Brooke’s CF genes are class 1 and 2 mutations are on her records as severe.

She is still ok within herself so that’s a bonus I suppose. She also doesn’t understand the full extent of her condition which is a blessing.

She is still very active doing all her clubs to help her lungs try to stay clear.

Update 4th January 2017

Brooke has had a continuous cough for a month or so. We have tried extra antibiotics for 2 weeks like usual, but this hasn’t cleared it, so we are currently on the second 2 week course and hoping these will work. The next check up is February so fingers crossed it’s cleared before then, otherwise she might need to be admitted for IVs. We have all had a fantastic Christmas enjoying the sun of Cape Verde. Came home for Christmas Day to all her presents.
Thank you to every single person who has sent any post/gifts to all our family, including me 🙂 We really appreciate it and wish you all a super year xxx

Update 4th November 2016

Brooke has been to clinic again since our last update, she has put a very small amount of weight on but grown over a cm in height!
She’s been having a lot of aches and pains which is unusual and I’m quite concerned, I have mentioned them to her consultant who says to keep an eye on her.
She has recently started swimming lessons in the hope it will also keep her lungs clear! Other than that nothing major has happened, we are just plodding along trying to stay well. Thanks to all who have written and sent gifts

Update 2nd October 2016

Brooke has been doing quite well since our last update, she’s had a few coughs but nothing major, she’s still struggling with food and weight gain but that has become the norm. She’s still taking part in her dance and other activities, and recently took part in an inter school cross country competition – to take part is an amazing achievement for anyone, to come 2nd by been pipped on the line for 1st place for a young girl who has cystic fibrosis is an even bigger, amazing achievement and that is what Brooke did- she came 2nd out of about 40 girls from our district!! She did collapse over the line and did struggle to breathe but with me there we brought her round quite quickly so no hospital treatment needed!! I was the proudest Mum in the whole world that day, she just never ceases to amaze me!! She’s also had her dance exams this weekend and performed brilliant. Thank you post pals for all the kind encouraging words she receives, it’s very much appreciated!

Update 6th September 2016

Brooke is doing really well at the moment, at last clinic she had a little tickle so she is on extra antibiotics as a precaution. Her weight is still a concern, but I think we are all getting used to the idea that Brooke will only put tiny amounts of weight on each clinic visit. Thank you everyone for all your post.

Update 7th August 2016

Brooke’s doing quite well at the moment, she has got a slight cough which we need to keep an eye on. She lost weight at her last clinic, so we need to keep an eye on that too.
Other than that she’s doing well, enjoying the school holidays. Thank you for everything that the children have received, we are truly grateful.

Update 7th July 2016

We are having a tough eating month, for some reason Brooke seems to be eating less and less and the last thing I want is for her weight to drop, as she hasn’t got enough to lose. I’m going to let the clinic know when we go. She’s also been a bit chesty, but nothing I’m too concerned about at the moment. She is quite well in herself thankfully and has just had a dancing competition.She danced amazing and made it to the final in under 12 street dance, which is an awesome achievement at 8 years old! Thank you to all you amazing people for all the letters, cards and gifts that all my children have received, we are extremely grateful.

Update 2nd June 2016

Brooke has been to clinic this morning for a check up, her CT scan has come back clear so that’s a massive positive. She has gained 200g in 8 weeks, so there’s still lots of concern over that! In herself she is still doing well, lots of exercise to try keep her lungs healthy. She has recently started athletics as an extra activity.

However, she’s had a pretty tough bank holiday weekend, on the way to Chessington World of Adventures we were involved in a serious car accident on the motorway.Our car was a write-off, but somehow we all walked away with minor whiplash.Brooke and Kendall were in the back seats and took most of the impact, causing both to bang their heads and more serious whiplash!! However we tried not to let it spoil our weekend.

Update 3rd May 2016

Since our last update Brooke had to have a CT scan due to the drop in her lung function, we are still waiting on results though. She handled it very well, even having a cannula fitted without numbing cream. She has started to become more breathless after exercise, which is unlike her, so hopefully at next clinic we can get that mentioned. She has started another activity to try and help with more exercise- running, so hopefully this will help build her lung function back up. She is fine in herself, but she is starting to understand she’s different, and gets upset regarding her illness- which is awful for us.

Thank you for all the gifts/cards they’ve received, we are truly grateful.

Update 2nd April 2016

Brooke has been to clinic again since our last update, she had a small weight gain and a big height gain so we’re hoping that this means she’s getting enough nutrition. Consultants are still concerned about her weight though. Also her lung function has been dropping over the last year, so we are just waiting for a CT scan for her lungs, to see if there is any damage that may be causing this. She has also been falling quite regularly, but we have been advised to just keep an eye her, as it could be due to the massive height gain. Also we have  finally found out what her second gene is, it’s an extremely rare one and not much is known about it.But this will help the other 3 children when they are older to decide if they want to find out if they are carriers. Other than all the above she is doing well in herself and is looking forward to going back to school after the Easter break. Just want to say a big thank you to everyone for all the gifts and post that has made my brave princess smile.

Update 3rd March 2016

Brooke is doing quite well at the moment, she doesn’t have a cough which is great for her lungs.However, we are struggling convincing her to eat her meals. This is not good for her weight gain, because if she does get a cough it will be harder to fight infection. She has started to try do her own medication with supervision, which is fantastic.
She’s doing really well at school and is still dancing regularly to try and keep her fit.

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Aidan H

26 February 2016

Story written 2016

Since he was born, Aidan has been in and out of hospital with regular chest infections and viruses which really knock him for six. He now has a portacath and goes into hospital for two weeks every three months for IV antibiotics to be put through his portacath to try and keep him well. He is also fed through a gastrostomy after it was found he had an unsafe swallow.

As yet, we do not have a full diagnosis which explains Aidan condition. It is believed he has an undiagnosed genetic condition. We do know he has Ehlers-Danlos Syndrome which makes fine motor things such as writing quite difficult. He has to use special pens to help him write. He has recently started to enjoy Lego which has been really good at developing his fine motor skills.

Due to the number and frequency of his infections and viruses it is thought he has an issue with his immune system. He goes into hospital for a day every three weeks to have an infusion of immunoglobulin to try and boost his system.

Despite all this, Aidan is a happy chappy and nobody who meets him ever forgets him!

Update 1st November 2020

Both children have now returned to school, but at the same time appointments and tests that had been on hold are now coming in thick and fast. A couple of new things for both of them has also meant new referrals. But as always, they continue to take them all in their stride.

We once again thank everyone who  has sent post. This last 6 months has been hard on all of us complex families, but the post they receive always makes them smile.

Update 20th August 2020

Aidan has Ehlers Danlos Syndrome alongside other yet undiagnosed genetic conditions. He has daily pain in his joints, suffers random reactions, struggles to eat and drink due to swallowing problems, so has a feeding tube. He has had a few recent appointments and now has extra medication. 

Update 1st October 2019

As things stand, we are still waiting for certain consultant reports to come through. This will hopefully give us a better plan moving forward, for both of the kids. Things have been a bit all over the place recently, but the post they both receive always brightens their day, which in turn makes us smile. It really does have a cheering affect on the whole family during the darker days. For that, all of us thank all of you

Update 1st September 2019

Aidan has been struggling recently unfortunately. This is due to an increase in his pain levels and also more fatigue. He has been having a few more falls too. As a result, we have had a few long meetings and he will have a couple of new referrals as a result. These also apply to Rhiannon as it’s best if we get them both looked at together to get the whole picture. Aidan continues to be his usual smiley self and takes most of it in his stride, however we have had a few more tears recently. The post he receives from Post Pals is always guaranteed to bring a smile. So thank you one and all. 

Update 24th June 2019

Aidan is holding his own at the moment! We have had to increase one of his medications to keep things in check. We have a big meeting coming up to help us decide on the way forward for him. It is also looking likely he will need a trip to theatre in the very near future. 

Update 17th November 2018

Aidan is having a bit of a mixed time at the moment. He is very stable from a chest point of view which is awesome as this was a major area of concern for everyone. However, this stability is throwing up a number of other concerns as they become obvious. A new referral to one specialist has also led to a further referral to another. His joint pain and fatigue are also on the increase which is being monitored closely. From a stomach and eating point of view there is no change. Still suffering pain but doing his best. Despite all this, he continues to be a smiley happy chap. And nothing makes that smile as big as the post he receives from you amazing people. Thank you 

Sibling Rhiannon is also struggling with her joint pain increasing, but she is facing it head on and with such strength.

Update 10th September 2018

Aidan continues to really struggle with pain in his gastrostomy, as well as increasing pain in his joints. He has now been referred for more testing too, connected to problems that have re-emerged after the immunoglobulin therapy stopped. We will hopefully get these tests soon to move forward.

Update 2nd June 2018

Aidan is finding things a little bit tough at the moment. He is really struggling with pain and his energy levels are low. There has been a deterioration in his joint issues and we are waiting to see his consultant in the next couple of weeks about this. His gastrostomy was changed in the last couple of months,but it sadly hasn’t helped the issues he has been having. It’s even left us with a stoma site which is actually more “leaky”. He is also waiting for further swallow tests as a couple of his team still have concerns around his ability. Despite all this he continues to be a happy boy. The post he receives especially brightens his day. A huge thank you to everyone who sends him and sister anything.

Update 2nd January 2018

A huge thank you to each and every one of you who has sent Aidan H and Rhiannon cards and parcels during December. Between his birthday and Christmas, Aidan received so many beautiful cards. A massive thank you to everyone who sent anything during 2017. It was a huge source of comfort and smiles during a very difficult year.

It has ended with Aidan back on the surgical waiting list, waiting for his problematic gastrostomy to be changed. We are also having a number of issues with weight gain, meaning that we have had to reincrease his tube feeds. There are also re-referrals back into a couple of therapy services due to some deterioration, as well as widening gaps between him and his peers.

Update 4th October 2017

Aidan is currently having a rough time with his feeding tube. We are therefore waiting for a surgical review to try and get it moved and changed. He is also finding school much more difficult this academic year, leading to many phone calls and emails.

Rhiannon has now started high school. A few teething problems, but on the whole she is getting the much needed support to get her through. We also have an exciting month coming up so watch this space!

The post they both receive brighten their days so much.

Update 21st August 2017

Lots of appointments at the moment for both children. A few tough days for Aidan. Eating has not really progressed meaning we have had to delay dropping more of his tube feeds. His gastrostomy has been giving him one or 2 problems too meaning we suspect it may need to be changed soon. A couple of busy exciting months coming up so we are doing absolutely everything to keep him going!
Thank you as always for the lovely cards, gifts, emails answer general well wishes. They make those darker days just that bit brighter giving us a light to see through them.

Update 5th June 2017

Aidan has had another busy month of appointments but still continues to be unable to drink due to his swallow not being safe. He has also enjoyed another short course of hydrotherapy and we await a final assessment on the impact it has had and whether we can add this in as a long term treatment. June will bring another couple of big meetings to discuss a way forward/next steps. This month, we have also had Rhiannon’s birthday, so we have had parties and family time which he has thoroughly enjoyed.

Unfortunately, Mum has spent time in hospital again but is slowly on the mend now. We also have Rhiannon undergoing a minor operation on the 8th of June so hospital continues to be a factor for us as a family.

Post Pals continues to be a shining light for the children and we thank everyone who has sent cards and parcels. Sorry that we haven’t been able to thank you all personally.

Update 1st May 2017

Aidan can now eat, he has been doing relatively ok. He has restarted hydrotherapy for a month, which he absolutely loves. He has also had another swallow test to see if he can start drinking but unfortunately he failed this. As a result, he has ended the month with a chest infection. While he is feeling unwell with it, he is not allowing it to stop him and so far we have managed to keep him out of hospital. Once again, your letters and parcels have been a big highlight of another generally difficult month within the family. Each and every one received bring huge smiles to the faces of both children.

Update 2nd March 2017

Tough start to this month with Mummy in hospital. Aidan is doing quite well though. He has had a chest infection but for once we managed with just treatment at home. We have now also been able to progress from purees to some normal foods and he is loving it! We have yet to find something he doesn’t like!

Rhiannon has also found out this month that she will need her 6th ENT surgery, but we have yet to receive a date for that.

Your letters and cards continue to be a great source of joy and comfort to both children, so thank you.

Update 4th January 2017

Both children received so much Post in December! Aidan had both Christmas and his birthday to celebrate! Lots now coming up in the coming months for both of them. Lots of tests and a couple of new therapies. Thank you so much Post Pals for your continued smiles.

Update 4th November 2016

Good month overall for Aidan. Kicked off with a great weekend at Chessington!! It was great to spend time with other kids and parents who understand just how difficult it can be when your child is unwell, especially when it comes to chronic conditions. Thank you Post Pals. His infusions continue. We are still trying to persevere in getting him eating orally. This is proving to be very slow going though. Rhiannon has had extra referrals added to her list. November is going to be busy as we have lots of appointments, meetings and an admission for Aidan. We are hopeful that all this will give us a bit more direction overall in terms of treatment and care for both of the children.

Update 2nd October 2016

Nice quiet month for Aidan really. A couple of hospital reviews and back to school! The latter is wearing him out but we are monitoring this. Both Aidan and Rhiannon love receiving post and will sit together to open any that comes. It’s just about the only time they aren’t arguing! Thank you all.

Update 5th September 2016

August has been a fairly quiet month for Aidan. Still had a few appointments, but no real big ones! He has remained fairly stable health wise. One or two small blips but they have been handled without the need for admission! However, we have noticed a drop in his energy levels with fatigue kicking in much quicker than before. He does have a new wheelchair coming following a reassessment, so hopefully this will give him back some independence. Now counting down the days until the return to school.

Update 7th August 2016

While not 100% well, Aidan is currently in a reasonable spell for him, but is still having problems with moving forward in terms of eating. We do have a couple of big appointments coming up in the next month or so, which we hope will help give us some answers moving forward. Aidan is still loving receiving his post and we have to read them over and over to him!

Update 7th July 2016

Aidan started the month in hospital having IV antibiotics. While there he received his brilliant Minion balloon, which is still going strong! He has also had a difficult month with gastrostomy problems and is in pain.

Both Aidan and his sister received lots of lovely cards and letters as well as a few gifts so many, many thanks. They both love receiving post.

Update 2nd June 2016

Aidan is finishing the month back in hospital for his planned IV antibiotics. He has actually done pretty well this time, and even though he was starting to be unwell as he came in,  he wasn’t as poorly as he has been at this stage in the past. He is still loving receiving things from Post Pals so thank you all.

Sibling Rhiannon has also had a couple of appointments and will also now start to receive some of the support she needs.

Update 2nd April 2016

Aidan started the month in hospital, finishing off some IV antibiotics. He then had to go back into hospital for a gastrostomy change. We had a couple of fairly good weeks but he has ended the month with another chest infection. So far, we have avoided admission and have everything crossed, so we can manage at home. The post he has received in his first month as a Pal has been amazing and certainly put smiles on the faces of both him and Rhiannon. Thank you!

Update 3rd March 2016

February has been a very busy month for Aidan. The most exciting thing for him was being accepted as a PAL! He spent the last two weeks of the month in hospital for his antibiotics. This was a very difficult admission with lots happening. One good thing to come out of it was that he had a swallow test. As a result we can now start introducing tastes. This is the first step in a long journey to eating again. We look forward to seeing what March will bring!

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