C/O 2 Robertson Avenue
Leasingham
Sleaford
Lincolnshire
NG34 8NJ
United Kingdom

NB: this is a forwarding address for the Pal, we do NOT disclose home addresses

Email Pal

Ruby J's Parents/Guardians

Lucy and Alan

Ruby J's Siblings

Ruby J's Interests

Ruby loves the colour PINK and anything PINK! Her favourite TV programmes are Peppa Pig, Ben and Holly, Fireman Sam and Humf. She loves Hilltop hospital! She adores books, loves storytime and even makes up her own stories. She loves princesses, fairies and bunny rabbits. In fact we both love bunny rabbits!!! She loves singing songs, listening to music, dancing and playing musical instruments with Daddy! She loves little notebooks and pens and likes to make lists all the time! She loves pretend picnics and real picnics! She loves picking flowers for mummy. She loves to learn, and constantly wants to know about everything!!

Ruby J's Favourite Colour

Pink

Is Ruby J able to read?

No

Is Ruby J able to use hands?

Yes

Is Ruby J visually/hearing impaired?

No

Does Ruby J suffer from any developmental delay?

No

Story written 2009

Ruby is a true fighter! She has battled with her condition since birth, which in total means she has spent half of her life so far in hospital.

When she was born they discovered she had a extremely huge bladder which is very rare. She also has problems passing her first bowel movement. After weeks of tests she was sent home. They didn’t know what was wrong but they hoped for the best. However 3 months later we were admitted to hospital due to vomiting and dehydration. It was the first time we learnt about 'pseudo obstructions' of the bowel which happen randomly and can be life threatening. For the entire year we would be home for 2 weeks, then in hospital for 2 weeks.

She has struggled with her condition for a long time now. Spending so much time in hospital can be very difficult. There is nothing that would cheer Ruby up more than getting letters from friends wishing her well. She loves opening post. She loves all things girly and pink!

She is a true star and always smiles. She is our beautiful angel. She has been through so much.

This year has been none stop tests and procedures. So much so that she is starting to get fed up and feel a bit down. All her amazing doctors at Great Ormond Street have decided that she is going to have some surgery to make her life better. The second week in December she is due to have major surgery on her bladder, stomach and bowels. They are hoping this will make life easier for Ruby.

She would really appreciate some smiles through the post!

Update 28th November 2011

Ruby has done quite well since our last update! Ruby's trip to Disney world was amazing and you can view the pictures if you click on the link to my blog above. She had the best time and created memories that will last a lifetime.

Ruby adores school and begs me to let her go on a Saturday and Sunday! I'm trying to see this as a good thing! She is little ‘Miss Independent’ now and wants to do everything by herself. She loves going on the laptop and Daddy's phone... and at parents evening they commented on how wonderful she was on the computer. I am trying to work some magic to get her an iPad!! I know a few other children we have met in hospital have them and it seems to be a real asset for them. Very educational and fun. Watch this space!

She is excited about Christmas and just so happy. She is still on her TPN drip but the doctors have said to have 2 nights off per week. Whilst this is good news for her liver, we are a bit worried about her weight and how poorly she sometimes feels when she goes a night without it. Fingers crossed it works out ok!

Thanks so much for the post received this month, it makes Ruby really happy! Especially when she is having a bad day on the settee missing her friends and then granddad brings some exciting post round! Thank you!

Update 16th September 2011

Ruby had many tests at Great Ormond Street during out admission in July and we are still awaiting the results, but working on the theory that no news is good news.

Ruby has been well. Had a few blips though. She was admitted to hospital in early August as she had an extremely high temp, she had to have IV antibiotics in case of having an infection in her blood, but thankfully after 2 days the results came back clear! Just a normal kid’s bug. Also, she is anaemic now - she has not got enough iron in her body. She is so pale it is unreal and some days I think she glows! Some days the anaemia really affects her and she gets extremely tired and will not walk anywhere at all, but then other days she is running around all day. They are hoping to put more iron into her TPN drip that we give her overnight and hopefully this will improve her energy levels (and mood!).

Ruby started school this week. Ruby had the best time and Mummy cried lots! At first she wasn’t sure about having all these new rules… but she has come round now! The support in school is very very good and I am really happy with the level of care. She will always have at least one fully trained assistant with her. Well, now I don’t know what to do with myself. I have been Mummy nurse for the last 4 years and now I’m not needed!

This week we are going to Disney World Orlando!! Make a Wish have granted Ruby's wish to go there and she is so excited!!!!

Thank you all for the lovely letters, cards, and gifts that you have sent ruby - it really brightens her day! Thank you Emma, Maisy and Badger, you’re always thinking of Ruby! She loves hearing what you have been up to!

Update 29th June 2011

This month Ruby is being admitted to Great Ormond Street hospital again. I can not remember the last time we had a planned admission. There are some very different emotions to work through. Every year Ruby will need this MOT to see how the artificial feed into her veins overnight is affecting her body. It can have serious implications for get liver, kidneys and bone growth. We did all these tests before she commenced TPN (Total Parenteral Nutrition - all your essential fats, vitamins, minerals and fluid given via a drip into a central line placed into a main vein in her chest) so these tests will be done to compare the difference.

They decided on the date very last minute and were very inflexible so we’re now having to miss our summer holiday to the Lakes with our friends. Ruby was very excited about going to Beatrix Potter World and seeing Peter Rabbit. We are always determined to stay positive though and hope that if she is well enough after all her tests we will find something really really fun in London for her to do as a reward for being brave as always!

Ruby had her first taster day at school and LOVED it! She just can't wait to start. We also met Ruby's new one to one assistant and started some of her training. I think she was a little overwhelmed at how MUCH training is needed and just how many "bits" Ruby has! There will also be 2 other fully trained members of staff at the school and a dedicated medical room for her! She has inspected it all and it all meets her approval (phew!).

Ruby had a fab time at the Post Pals party and loved catching up with all her friends from hospital and meeting new friends!! Thanks for a wonderful day; we had a really lovely weekend!

Thanks for writing to Ruby; she really loves your post! She will appreciate it even more this month as she really dreads these tests, especially tests on her bladder.

Update 21st April 2011

In the last few months Ruby has been enjoying the best times of her life. I can not believe I am about to say this but she has not had an admission to hospital in 4 months!!!! I never ever thought I would be able to say that! Ever since Ruby was born we would be in hospital for more than 50% of the time. Two weeks in, two weeks out, and then last year she was in hospital from January until September. That was a very hard time. She struggled so much but always had a smile on her face, even on the worst days. Some days she did not have the strength to even sit up. But she would still have a smile for everybody. She really is my amazing girl, and I am so proud of her because she NEVER GIVES UP. Not even at the lowest points.

We are so happy to be enjoying some family time at home together! She still has 24 hour care needs. We take turns to do the nights and 3 nights a week we have a carer to look after Ruby so we can get some sleep. Every night at 6pm she goes on her TPN. This is a fluid that is fed into a vein near her heart, through a pump, much like a drip in hospital. It contains all her calories, vitamins, minerals and fat. Ruby can't eat much but enjoys nibbles of foods and likes to try anything she can! She also has a variety of other tubes that need to be connected at night time. She never moans, grumbles or gets fed up with her situation. She knows that all her 'bits' on her tummy are the very things keeping her 'well'. She accepts her life and all the medical care she gets, as she appreciates everything so much! She adores nursery, no doubt because she spent so long in a hospital bed without many friends. She loves meeting people, playing outside, the sunshine, the grass... all the things that we take for granted but are so precious to her.

Medically she is doing well - she is putting on weight and growing. Excellent news! We also removed her permanent catheter that was through her stomach as she has been urinating on the toilet all by herself! The doctors told us this would not happen, that she would always need a catheter, but here we are, Ruby using the toilet and gone from wearing 2 nappies to wearing knickers! We still leave a catheter in overnight because she needs it with all the fluid she is on overnight! We are so proud of her!!!

Thank you so much to everybody that sent Ruby a present for her birthday, she is a very lucky girl indeed! She has been hard at work making works of art which will be sent to everyone that left their address. She loves hearing from you all. Ruby's favourite kind of post is cards. She loves bright cards, and obviously anything with a fairy / princess / bunny rabbit on is always a winner. She keeps all her cards! She also likes it when people make up stories for her and put pictures in, especially if Ruby features in the story. Emma IOM always sends these and Ruby loves them!! She sent a picture of the Fairy Bridge on the Isle on Man and this has sparked so many games, stories and dreams! It really is the thoughtful things that don’t cost much that really have an affect!!! She loves all her presents too. Today we got quite a few art and craft parcels for Easter which she loved! We can’t wait to get stuck into them this weekend!!! We got one anonymous parcel with a photo frame kit, Easter egg, magnet kit and more... it’s wonderful and so thoughtful! Thanks to whoever sent that!!!

Update 1st November 2010

We have been home for 2 months now and we are LOVING IT!! Ruby has a lot of complex medical needs which means she has a Stoma bag, a catheter through her tummy, a central line for her TPN (all her calories and vitamins are given through this as she can not eat) and a Mickey Button into her stomach to ease pressure that builds up. We are very lucky that Ruby’s Daddy and I can care for all of these needs at home now instead of in hospital! She now has a portable TPN pump which means that she can get out and about, nothing can stop her now! It will be a very rare occasion now that would mean us having to go back into hospital. She has spent over half of her life in hospital and 8 months this year (January - August!). We are so happy that we can finally be at home together! It is an awful lot of hard work and stress but it is all worth it when we see her smile in the morning. As soon as she wakes her first question is 'Is it nursery today?’! She adores it and goes 5 afternoons per week! She has missed a few sessions due to appointments and her tummy but the nursery understand - she is adored by the staff and loved by the kids. She already has 2 parties to attend this month - her diary is much more exciting than ours!!

Health wise Ruby is doing well. She is managing small amounts of soft foods which is fantastic - she has put on weight and for the first time in 18 months she has grown taller - YAY a major milestone for us! In the last 2 months she has grown 3 centimetres. Her weight was static at 10.2kg for a year, but now she weighs 12.8kg! Whilst we celebrate these achievements we also know that none of this would be happening without the TPN and that essentially Ruby's bowel has failed. That is sad, but at the same time we are happy that she is doing so well on the TPN.

Thank you so much for all the post that has been sent to Ruby, she has had some lovely letters, cards and gifts. We can never thank you all enough. A big shout out to Grannie Ruth who always manages to cheer us all up even on the worst days (including Granddad!) and to Angela who is facing her own battle as we speak but who has never failed to send Ruby a card every Monday since last December. Know that we are thinking of you and think of you as one of the family! Thank you also to Jenny and Ben who have been spoiling Ruby rotten!!!! Also to Rosie and Mandie who know the secret to a girls heart! And of course thank you to our special friend on the Isle of Man - Ruby thinks it's so cool to get post from someone living on a little island!! Thank you to everyone else too - you're amazing! I have some special photos of Ruby in her Ballerina outfit to send out, you should all get one soon! That’s if I have been good and kept your address - I'm afraid sometimes Daddy lets Ruby rip open her cards and presents and doesn't save the addresses so I can’t say thank you. Don't worry though - he's been told!

A while ago somebody sent Ruby the complete Peppa pig collection series 1-3 to watch on the computer. I never sent a thank you as she was quite poorly at the time, but I just wanted to mention this as it really has provided days upon days of endless entertainment for Ruby and I can’t emphasise how it has been invaluable. It has been a constant companion at home, in hospital, and in the car for months now and was such a thoughtful gesture - thank you! As you have probably guessed Ruby is obsessed with Peppa Pig, she adores her. I have to admit Mummy and Daddy love it too and often find an hour or two had drifted by with all 3 of us laughing at Daddy Pig and Co!

Thank you Post Pals for always planting a smile on Ruby's face, she lives for Sundays when Granddad brings the post round!

THANK YOU FROM RUBY THE BALLERINA, LUCY AND ALAN.

Update 13th August 2010

Hello everyone... I don’t really know where to start! If you click on Ruby’s caringbridge link (there is a link at the top) you will be able to read her journal and everything she has been through lately.

We are now at Great Ormond Street and they have decided to take the food away from her (again). She is struggling with this decision and keeps asking why she can not eat anything even though she is not poorly. They want to see if they can get her on a milk diet and wean her off the TPN which is giving her all her vitamins and calories etc into a main vein through her central line. There are big risks associated with TPN, but we are very worried that we have tried and failed with this milk plan numerous times over the last 6 months at QMC and feel it is pointless doing it again. We believe she needs a strong motility drug like Cisapride which we believe would allow Ruby to go home and eat food. Patients in America are on this and do well. It is unfair that Ruby is suffering because of where she lives. I really hope my next update will be more positive. We have been in hospital now for 7 months none stop. In that time we have said goodbye to one house and moved in to another (although Ruby and I have not seen the new house at ALL!). We hope and pray that we will be home soon with a plan that allows Ruby to grow and develop and get on with her life! Nursery starts in September and I just hope and pray she will be able to go.

Thank you so much for the post that you guys have sent! Thank you to Rosie and Maddie who have sent Ruby some amazing gifts and the letters and cards that Rosie send are always so much fun, she loves them! Thanks to Angela (we are thinking of you) and to Arlene and Lambie! Also to Kim Lawrence and Steph who always make Ruby SMILE (and me!!! Thank you Steph)! Also a big shout out to Anne Bennett, I don’t know if you read this though! Emma... you should be getting something extra spesh in the post that Ruby made! Badger, we love you and hearing your stories, you are so cool! A big big thank you to Maria Broomfield who has supported all 3 of us and kept us going even though things haven’t been easy for her! A special lady!! Also, THANK YOU VIKS for giving Alan and I an amazing night out in London all expenses paid - memories that we will carry with us for the rest of our lives. Thank you to all the other wonderful people who send post to Ruby, you can’t know how much it means to us! :-D

Update 30th April 2010

Ruby has been in hospital for over 90 days so far this year alone. So that would be nearly two years if you add it all up. We really thought that this year Ruby's health would be sorted and we would be able to spend time home as a family. But the surgery she had at Great Ormond Street in January didn't turn out as expected and rather than making her better it has made things much, much worse. I wait until she has gone to sleep and shed buckets of tears for her. To see your child suffering and wasting away in pain is the WORST thing imaginable. But then there are days when Ruby’s tummy allows her to have fun and be pain free. We cherish those days and live them to the full!! Even when Ruby’s bowel has gone into an obstruction and she is so so ill, she still manages to have a smile for everyone and she is just the happiest little girl in the world. She amazes me more and more with every day that passes. If you asked Ruby about the last 3 months she would tell you they were fun. She’s got friends in hospital and the nurses love her. The surgeons, nurses and playworkers shower her with affection and attention and she really is surrounded by love on a daily basis. She has Mummy and Daddy living at the hospital with her 24/7 giving her all the care and support she needs. We need to be here with her and will do whatever it takes to make her feel content and secure.

Last week Ruby ate 3 meals a day for 8 days. YAY! We really thought we had a breakthrough, but unfortunately she went into a terrible obstruction where her bowel and stomach just shutdown completely and sadly she ended back on IV fluids for the first time in a month. She has been in terrible pain this week... I don’t know how we got through the last 3 days. But we did, somehow. And now we are trying to get her back on her milk and start trying again... but how many times will we try before we admit she needs more help? Will my darling angel never be able to eat again? She adores food so much its heartbreaking.

But we would get her through it and support her all the way… if it meant an end to the pain. We think we may be being sent back to London, because our hospital doesn’t really know where to go from here. One thing is for sure though; they will never give up because they love her too much! Let’s all hope and pray that when I update next month I have some positive news. We will NEVER give up fighting for Ruby! Our shining star!

WOW! I cannot believe the amount of post Ruby has received this month. You all care about her so so much. We have been amazed and blown away by the love shown to Ruby during this hard time. It really is difficult for her at the moment. She has been in Hospital since the beginning of Jan and that's no life for her. The amazing response we got after the Russell Howard show! The postman came in his car after work one day because there was too much to carry... WOW!

We always write back to people that send her gifts and if she is well enough we often write back to cards, but this month it is physically impossible! So if you sent Ruby a card, letter or email - THANK YOU SO MUCH!! I can guarantee that you put a smile on her pretty face. She loves hearing from you and what you are up to!

Update 14th February 2010

WOW, you have made these last 2 months so much easier for us! Thank you all so much for everything you have sent. I am sorry if i haven’t sent you a thank you note, it is because we have had a very rough month. I really do try to thank everyone, but i know that some of the best presents and letters have not been responded to. This is because i kept thinking i will write a proper letter, but never got chance to because i was waiting for things to get better and they haven’t! THANK YOU!

Update 3rd January 2010

Hello everyone! Well what a difference Post Pals has made to little Ruby's life. To say 'thank you' seems insufficient! She has received the most wonderful cards, letters, postcards and presents from the kindest people! We will try to thank everyone individually who have left their address details, but to everyone else, I can't thank you enough! You really brightened her month. Especially when she was in hospital on Christmas Day! When we got home on Boxing Day she had a huge pile of presents and cards waiting for her, it made her so happy!

Ruby's surgery in December was cancelled at the last minute. We were really disappointed, because we just don't know how much longer she can go on like this. Since then she has had 3 admissions to 3 different hospitals, 3 ng tubes, 6 cannula's, and 4 Pseudo Obstructions. The longer Ruby waits for the surgery the worse her condition will be in later life.

We got the date - it's the 15^th January. So we will be in London from the 14th for 2 weeks and if anyone wants to cheer Ruby up please send a little hello to her at the hospital!

Ruby J

Rainforest Ward

Great Ormond Street Hospital

Great Ormond Street

London

WC1N 3JH

The surgery and recovery will be hard. Ruby is having an Ileostomy and a GTube (Gastrostomy). So when she wakes up she will have an extra bag and tube. I know she will cope fine; she is the most amazing, strong little girl! She will be very sore, so any nice letters to cheer her up would be wonderful!

Update 11th December 2009

I would like to thank the lovely people that have been sending Ruby post and presents! She’s so happy right now, it’s really making her week. Thank you all.