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 arts and crafts and spends time in hospital making things for her nurses or to put on her wall. She loves craft kits e.g. design a hat. She goes through so much glue its unreal! She likes listening to music, dancing around like a ballerina, playing with musical instruments... one day she will have her own little pink real guitar and then she will be able to join in with Daddy, but for now she SINGS! She loves singing songs, nursery rhymes. She likes blowing bubbles. She loves photos; she collects photos of special animals and her friends and keeps them all in her photo box. Ruby loves animals... her favourites are Giraffes, Cats, Mice and Elephants! She wants to go to the zoo when she is better. At the moment Ruby is SERIOUSLY into pink! The surgeons joke that EVERYTHING has to be pink. Pink juice, pink bed covers, pink clothes, shoes, socks, PINK EVERYTHING!! She likes stethoscopes and telescopes (especially pink ones) and informs me that she wants to be a surgeon or a 'zoo lady'. She adores books, especially nice relaxing sleepy night time books, and pop out books!

Ruby J's Favourite Colour

Red

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 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.