We have converted this to Finley’s Official Fundraising Page. Thank you for finding us.

Finley was very poorly at birth.  His oxygen sats were dangerously low and his haemoglobin had a score of 5 (normal rate is 18-22). He was severely anaemic and very lucky to be alive.  He was spent his first 12 days of life on the Neonatal unit and had 3 blood transfusions in the first 24 hours of his life. It was then that he was diagnosed with DBA (Diamond-Blackfan Anaemia).  A condition so rare, only 125 people in the UK have it

DBA’s primary symptom is bone marrow failure which means he can not produce his own red blood cells and requires monthly blood transfusions to survive. One side effect to constant transfusions however, is organ failure due to iron overload.  So it is a constant battle and juggle to keep Finley healthy and alive.  

Finley is also profoundly deaf and wears cochlear implants after having surgery to implant them into his skull bone, at the age of 1. Six months post surgery, he contracted meningitis for the first time. After 17 days in ICU and 6 weeks of IV antibiotics, Finley recovered well. 

At the age of 3, Finley had to have open heart surgery to close a VSD and a prolapsed valve, as well as reduce muscle thickening around his heart. His heart was stopped in order to fix his issues. He was due to spend 14 days in ICU recovering but miraculously he was home within 6 days! What a fighter! 

Then once again, just before he turned 4, he contracted Meningitis again as well as Sepsis. Once more he ploughed through and has amazed us with all he has over come in his short 4 years.

Finley doesn’t let any of these hurdles in his life hold him back. He has global development delay, muscle weakness, delayed S&L and metabolism issue but he is the happiest, determined and stubborn little boy who we call - our warrior.

We are raising money, not for Finley himself but for his charity - DBA UK, who fund vital research into better management and hopefully once day, a cure. The charity also support families with DBA as the condition is so unique and rare. There is very little funding for research. 

 Anything you can spare will be much appreciated. Many thanks. Ellie, Finley and family xx