Finley has a rare genetic disorder called DBA (Diamond Blackfan Anemia). It is so rare that approx only 125 people in the UK have the disease. Having this disorder means Finley cannot produce his own red blood cells. In order to survive he needs a blood transfusion, monthly. The transfusions keep him alive however come with side effects. The iron from each transfusion cause iron overload and therefore eventually will cause organ failiure; currently he is on oral iron chelation management. Other effects from his disorder include profound deafness; of which Finley has cochlear implants. He is currently progressing well with his implants, however, they could have contributed to him being in intensive care for 3 weeks, in November 2018, with meningitis. Additionally, he has Delayed development in his gross and fine motor skills and a heart condition which will also require open heart surgery in the near future.

There is no cure currently for DBA. He will remain transfusion dependent for life. In the future, his options could be; a steroid trial, which he currently cant have due to further risk of contracting meningitis again. Or a bone marrow transplant.

Finley’s direct charity DBA UK, is fundraising for 3 new research trials in looking for a cure. As you can image, with only 125 people in the UK, research and trials is highly expensive and rare, so every penny counts. The charity needs to raise £130,000 this year, which means each DBA family need to raise £5000 each. Hence we have set up this fundraising page. Anything you can contribute would be amazing, bake sales, selling garage junk or just having a few friends for coffee, would all help! Thank you!

Finley having hydrotherapy.

Finley after his cochlear implant operation