I have a lovely little boy called Sebastian, he is now 4 and half.  Within 2 hours of him being born we identified a problem and he was air ambulanced from the Isle of Man where we live to Alder Hey Children's Hospital is Liverpool.  He was operated on within 24 hours of being born with a suspected twisted bowel, sadly a twist was never identified and his symptoms persisted. Ten days later he was operated on to insert a central line into his chest cavity to administer tpn (an intravenous feed), five weeks later they operated to place a gastrostomy into his tummy to drain off bile and stomach contents to prevent him vomiting and an ileostomy to try to relax the bowel and hopefully help it to function better. 

Sebastian finally got home at 11 months old.  He has had many admittances to hospitals, and meeting with consultants, a week appointment for tests in London at Great Ormond Street, where we were told that potentially and very realistically he would require a full bowel transplant, small and large bowel.  He has been diagnosed with Pseudo Bowel Obstruction, translated this means that his bowel does not function like that of a normal persons and he is unable to eat and presently picks and licks food and drinks about 400-500ml of milk a day.  Although we are thankful he can drink a little it is not enough to sustain himself.  He relies on the tpn for 14 hours every night, tpn is a chemical substance that is very destructive to the liver. The damage it causes to the liver is ultimately irreparable and a liver transplant maybe required.  Seb's liver is handling things very well and although his condition is incurable he is absolutely getting better.  So you see he is our little miracle. 

Rebecca House here in the Isle of Man is the only form of respite currently offered to children like Seb with their special unique stories.  They have been a complete lifeline to us as a family and they offer a wonderful supportive and caring environment for Seb.  I will truly never be able to put into words how much Rebecca House have helped us with our beautiful special little boy, Sebastian.  To be blessed with a child is a wonderful thing to protect them and love them, however when you are blessed with a child whose future lies in the balance more so than normal, you have to pull strength deep from within sometimes and those surrounding you supporting you mean even more and you appreciate every act of kindness shown to your child even more, thank you for taking the time to read this, for supporting us and for your kind donations, THANK YOU!!!!!!!!!!!!!!!!!! x x x