Essex family hopes to raise £50k for IVF to save their son
A couple is trying to raise £50,000 to have another baby in order to save their son's life.
Henry Alderson, one, has diamond blackfan anaemia, an incredibly rare condition affecting only 120 people in the UK. It means he cannot produce his own red blood cells.
The toddler, from Dovercourt, is also the only known person in the world to have another gene mutation with it. Because of this he is at high risk of developing leukaemia or mylodyplasia.
Parents Zoe and Craig Alderson have been told Henry’s greatest chance of leading a normal life is to receive a bone marrow transplant from a matching sibling.
However, Henry is an only child.
And with Henry needing a matching donor, Zoe and Craig have turned to IVF – which will also help as Zoe has a benign tumour on her pituitary gland which means she was unlikely to have children, with Henry an unexpected and welcome pregnancy.
Zoe, of Artillery street, said: “He is such a happy, lovely boy and so brave and resilient with the treatment he is going through.
“It has been very hard for all of us.”
Henry has been fighting the odds since his first 12 week scan at Colchester General Hospital, when doctors found he had pockets of fluid in his body.
Zoe and Craig were sent home and told to prepare for the worst. But as the weeks went on, Henry grew and survived.
He was born by emergency C-section at 36 weeks and was rushed away to undergo three emergency blood transfusions.
At first it was still not clear what was wrong with the youngster. But after Henry had to undergo repeated blood transfusions, tests showed the genetic abnormalities.
Zoe said: “He was born and immediately taken away because they could tell he was really struggling. They took a picture of him for me, but it wasn’t until 14 hours later I got to see him.
“It feels like we are fighting different and numerous organisations just to get them to consider our case. We are now fundraising because we have wasted so much time waiting for people to say yes.”
The couple are hoping to raise £50,000 to cover the three rounds of IVF. So far they have raised £11,700.
• To donate, go to the family’s Crowdfunding page.
Diamond blackfan anaemia
Diamond blackfan anaemia is a rare bone marrow failure disorder where people cannot make their own red blood cells.
The condition causes fatigue, lack of appetite and a pale complexion.
Treatments include regular monthly blood transfusions, which Henry undergoes, and steroid treatment.
A bone marrow transplant from a healthy sibling would allow Henry’s body to create his own red blood cells in future.
While Henry could receive stem cells from a potential donor not related to him, his chance of not surviving is 10%. If it was a sibling it would just be 2%.
Having IVF would ensure Henry’s brother or sister would be a match to Henry and would also not carry the same genetic mutations.
Mum Zoe said when their fundraising reached £15,000 they would be able to start their first round of IVF, which will hopefully see a much-loved second child brought into the world, and also save Henry’s life.