Nicholas is a 5 year old boy in reception at our children's school.
Nicholas was born with a rare congenital condition, partial deletion of a chromosome. It is so rare that it is defined by the symptom rather than a name. At only 5 years old, Nicholas has had 9 operations. He has generalised multisegmental lymphedema, which has made one hand swell disproportionately, and he has a mass in his abdomen, which is also putting huge pressure on his heart. His treatment really consists of dealing with each symptom as it occurs, and prolonging his life. There is no systemic cure.
Now his mum, Rebecca, has taken out a bank loan to take him to Boston for assessment by a specialist team who think they can help Nicholas with various treatments not available on the NHS. This photo was taken just 3 days ago. The money raised in this campaign will be used to fund the trip and initial treatment, if indicated. If a treatment appears to be working, this will build evidence to continue this on the NHS.
Nicholas cannot be cured, but with help his quality of life can be supported and his life extended for as long as possible. Any money not used will be donated to Children in Need.
Nicholas is a lovely sunny little boy, who is very popular at school.
We are raising money through crowdfunding because in the UK you cannot set up a charity for the benefit of only one person!