Thomas and his twin brother arrived in April 2012, and at just two weeks old he had surgery to repair a heart defect at Great Ormond Street Hospital.  While in recovery, blood tests indicated a liver problem and numerous tests at Kings College Hospital eventually led to a diagnosis of Alagille Syndrome, a rare genetic disorder that affects his heart, liver and kidneys (see http://www.childliverdisease.org/Information/Medical-stuff/Information-on-liver-diseases/Alagille-Syndrome for more info).

Thomas's liver function is severely impaired, which means that he struggles to absorb food, affecting his growth and general health.  He is jaundiced and suffers constant itching under his skin which keeps him awake at night and makes him scratch until he bleeds.  He has trouble clotting, so just a tiny scratch can bleed for hours, making even a routine operation much more difficult. Thomas also has narrowed heart arteries that will require further surgery as he grows.

Despite all this, and the constant medicines, supplements, check ups and blood tests, he has a relatively normal life and loves nothing more than chasing and wrestling with his twin brother.  His condition is currently stable, and we hope that he will improve with time, though a liver transplant may one day be required.

We've experienced first hand the difference in treatment options for children with liver disease versus those with heart conditions.  The gap is immense and funds are needed for more research.  CLDF also provide information packs and opportunities for children with liver disease to get together and have fun and as Thomas gets older, these days will be invaluable in helping him understand and cope with his condition.

More children are diagnosed with liver disease than leukaemia and in most cases it is life threatening, yet it remains a relatively unknown and often misunderstood condition.  Just one charity exists solely to give these children a voice and the hope of achieving their full potential. 

Donating through JustGiving is simple, fast and totally secure. Your details are safe with JustGiving – they’ll never sell them on or send unwanted emails. Once you donate, they’ll send your money directly to the charity. So it’s the most efficient way to donate – saving time and cutting costs for the charity.