Hi everyone, I know you’ve all been waiting for an update on where we’re at, thank you for being patient with us.
We saw Henry’s consultant in London last week to discuss treatment plans going forward and we were in no way prepared for what was coming, everything has changed. We’ve exhausted a lot of the treatment options we had and Henry now qualifies for a transplant from a unrelated donor. His pump medication dosage has been increased and we now have 6 months to try and get his iron levels down as low as possible (it’s too high to do a transplant any time before that, it would be too dangerous). A transplant date will then be set, if we are all in agreement that’s what we want.
Unfortunately, we no longer have time to have the IVF to ensure Henry has a matched sibling donor for his tranplant. In light of all of this, we are halting the fundraising after our next event in a few weeks. We intend to use the money raised to have IVF in the future so we can ensure we do not have another child with DBA, if, for whatever reason, we cannot do this, the money will be used to help other children in a similar predicament to Henry.
Blood was taken last week to search the worldwide bone marrow register in the hope we can find an unrelated donor, a complete stranger who will be a suitable match for Henry. Now, more than ever, we are asking for help to make sure Henry finds a stem cell match for his transplant.
Please, please register with DKMS UK, it’s just a cheek swab. The chances of you being called upon to donate are extremely slim but if you are, you can usually donate your stem cells in the same way you donate blood and can rest easy in the knowledge you have literally saved someone’s life.
Thank you all so much for all of your help and support over the past year, it has been an absolute rollercoaster which is set to continue, but we will continue to do all we can to ensure Henry has the best chance of a long and healthy life. We will carry on posting updates on here as usual so you can follow Henry’s journey.
Love you all,