Powered by courage. Inspired by Jude.
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Here's an update on Jude Grey, as reluctant as I am to give it-
As many of you know, Jude has lived most of the last couple of years in the hospital. He’s been in and out constantly, and it’s taken a toll on every part of his life. Some of his closest friends now are his nurses (and his endocrinologist); people who’ve cared for him, laughed with him, and helped us through some of the scariest moments we’ve faced.
Now, we’re preparing for the next big step in his care: a move from Virginia to North Carolina so he can be closer to Duke Children’s. This isn’t a decision we made lightly. It’s happening because he’s about to begin yet another long hospital admission, where he’ll undergo more procedures, begin TPN (IV nutrition), and start trialing breaks from lines; something his team isn't even sure is possible. He’ll have his current port removed and replaced with a broviac line, which increases the risk of infection in a child who’s already fragile. This is our best shot at stabilization and hopefully giving him a better quality of life.
Moving him is pretty heartbreaking for me. We’re leaving behind his childhood home, his grandparents, his long-term, beloved pediatrician, and our best friends that have now become our family. He’s lost so much already; multiple sports, school, music lessons... Now we’re asking him to leave what little familiarity he has left, and I’m hoping with everything in me that it pays off for him.
When we were sent to Children’s Hospital of Philadelphia (CHOP) for a second opinion, the specialist we saw told me, “I can count on one hand how many children I’ve seen like Jude.” She identified his episodes as autonomic storms, part of a condition called paroxysmal hyperactivity syndrome, where the body completely loses the ability to regulate itself. She also told his team that Jude's condition is too complex to be seen at another autonomic dysfunction clinic. The level of care he requires is beyond what other programs can manage.
This condition is extremely rare, and there is no cure. There isn’t even a specific treatment plan. What we’re doing now is a trial of recommendations, each one a calculated risk. Some of the things that might help him could also be detrimental to his health, which means he’ll need to be constantly monitored as they try them. It’s not straightforward, and it's not safe without assistance. It's not something that can be managed from a distance.
These episodes are life-altering and can be life-threatening when they happen. Jude often requires manual stimulation to stay stable during these episodes, and I am his only caregiver. I’ve done everything I can to manage it all, but it’s reached a point where I need more support.
Because his body is working so much harder than it should just to keep up, he has no reserve. He’s often in metabolic crisis and ketosis. His body just can’t keep up anymore. That’s why this next phase of care is so important.
I’ve been unable to work consistently because of Jude’s complex needs, specialty appointments, frequent hospitalizations, and daily medical care. While I’ve been able to secure housing near the hospital, your support will help make sure I can stay with Jude during this hospitalization, and those that will inevitably follow. It will allow me to be by his side through procedures, recoveries, and everything else that comes with this kind of care.
If you’re able to donate or share this, thank you. I’m doing everything I can. I just want him to have a shot at getting better, while preserving every bit of happiness he has.
If you’d like to help in other ways, I've also put together an Amazon wishlist with things that will help keep Jude comfortable and occupied while he’s in the hospital for an unknown amount of time.
Thank you for being in our corner.
"Powered by courage. Inspired by Jude.”
Organizer
Chelsea Scott
Organizer
Durham, NC