Have some real life news I've been reluctant to share:
On 4/13 we welcomed our 3rd child, Oliver. Five days later he was diagnosed with an ultra-rare immune condition called SCID, also known as "bubble baby syndrome". This 1 in 100,000 disorder leaves Oliver without a functioning immune system and an inability to fight off germs.
If left untreated, SCID is fatal within the first year of life. Luckily, advancements in medical research now usually allow the condition to be treated through chemotherapy followed by an infant bone marrow transplant. This is a very long and difficult process, but we are hopeful this treatment will save Oliver's life.
Oliver faces at least six weeks at Boston Children’s Hospital followed by careful monitoring for at least a month afterward nearby. Once the initial bone marrow transplant process is complete in the Boston area, Oliver will need protective isolation at home in Vermont for up to a year afterward while his immune system slowly regrows and strengthens.
This has us in a heartbreaking and complicated situation. Treatment, which is likely to begin in June and lasts roughly 3-months, is only available at Boston Children’s Hospital about three hours from our home. This will require living in two states to allow us to care for both Oliver and our other two children.
In the meantime, our family has entered strict protective isolation, leaving me and my wife out of work and kids out of school and organized activities. When Oliver is about two months old and a bone marrow donor is identified, he is able to undergo chemotherapy which will condition his body to be receptive to the bone marrow transplant.
Until then, the day to day will be lots of tests and appointments in Boston while managing life in isolation with three young children (and two amazing cats!).
It is almost back to covid for us for the time being. The music/Phish community has been wonderful to be a part of the last few years and am thankful for everything.
I wanted to share this link my brother-in-law (the talented musician Ethan Buckner) started for me. We will be updating our progress and timeline at that link over the coming months.
Love and light,
Sean Thomas Ogle
gofundme.com/f/support-baby-…