Blake is a happy 6 year old who lives his younger brother and all superheroes. At a glance
you wouldn’t even know that he has Fanconi Anemia. But as you look closer you will see the bruises on his legs and arms because of his low platelets and the scar on his thumb from surgery. Blake was diagnosed with FA just
before his 2nd birthday. He was born with an extra thumb, mild hearing loss, and struggled to gain weight.
Blake is currently in bone marrow failure with lowblood counts making him tire faster, bruise easier, and get sick more than other children his age. Currently he goes to Seattle Children’s for a blood draw every month as well as yearly for a bone marrow biopsy. After every blood draw, we eagerly sit by the phone and pray for good numbers.
While we’d hoped that enrolling Blake in a gene therapy trial would prevent the need for a transplant, we have recently learned it was not going to do the trick. We knew that gene therapy could take a long time (a year or more, we are at about 7 months) to show any improvement. But that improvement would be really small at first. Sadly, the improvement isn’t coming.
We have decided to start the process of a bone marrow transplant. After talking about it together and then discussing with the doctor and making that choice, I could just feel this weight lifted off my shoulders. I know that a transplant is going to be so, so hard. There will be so many new challenges and Blake will, essentially, have to go through hell. But the thought of moving forward instead of waiting while Blake’s counts are so low is just a relief. As much as we hoped and prayed that gene therapy would work, we had to make a decision.