Henry has Diamond Blackfan Anaemia (DBA), a very rare genetic disorder meaning his bones marrow can’t make blood cells properly. He has to have a blood transfusion every 3/4 weeks to stay alive and will need daily medication to control the side effects of this.
There are many other symptoms and issues linked to the disorder meaning Henry struggles to eat properly and will need some operations in the future to correct some of the defects caused by his DBA. As well as a faulty gene causing DBA (RPS19), Henry also has a faulty SRP72 gene making him prone to myelodysplasia and leukaemia so it is highly likely he’ll need a bone marrow transplant at some point.
All that being said, he’s the sweetest, bravest little guy we’ve ever met and we are incredibly proud of him. The only way we can help Henry now is by having a matching sibling. We always wanted another child so we have brought our plans forward, the child has to have a gene match and the only way to get a match is via IVF, which the NHS will not fund.
We are fundraising to get up to 3 rounds of IVF, once we have this and the IVF is complete, and we have a match, on birth the stem cells from the umbilical cord will be harvested and used to save Henry’s life.