This 11 year old boy is the only person suffering from this rare incurable disease in Britain
Jack Buchanan, 11, from Bristol suffers from tricho hepato enteric (THE) syndrome which means he has no immune system and isn't likely to live beyond 21. He is the only person in Britain to suffer from a rare disease and it has only ever been reported 40 times worldwide.
The youngster has to take antibiotics daily and have weekly blood transfusions in hospital to stop him from getting poorly. The majority of people that suffer from the disease die before the age of five and no one with it has ever lived past their 21st birthday.
It took doctors eight years to discover the cause of Jack's health problems.
Jack's mother, Jaime Jones, 32, said she was desperate for a diagnosis but it was not until specialist mapped out his genes that they found a mutation which identified the rare condition. At the moment there is still no cure for the disease and Jack spends months at a time at Bristol Children's Hospital.
Jack and his mother are now organising a non-uniform day to raise money for The Grand Appeal at Ashton Park on Monday to thank the doctors and nurses who have cared for Jack. The day also coincides with Rare Disease Day.