I’m wanting to help my sister and her family. My nephew has a rare brain disorder called Vein of Galen Malformation and his surgeon moved and now they have no one in the state that will preform any procedures. There is NO CURE only treatment and if he doesn't get the care he needs things could change for the worse!
So many of you know their story but to those who dont here is a quick history and new update. Their almost 2 year old was diagnosed when he was 4 months old with Hydrocephalus caused by an AVM called Vein of Galen Aneurismal Malformation. Since then he has had 3 embolizations and of course countless test and neurosurgeon appointments and cardiologist appointments. While his heart is slightly enlarged from this monster it is 100% functional. So that we are blessed that his main problem has been the hydrocephalus. Which his head has continued to grown.
After his last embo in Dec his head stabilized but started to grow again a few months later. They had been getting treatment at Children's of Alabama in Birmingham, but after his last procedure his IR decided to move out of state and it left us with no body in the entire state that could treat him. So they took that as the best opportunity and God telling us it's time, To consult with Dr Orbach at Boston Children's hospital. He is very well accredited and has probably the 2nd most experience in his specific condition.
Today they received a call notifying us that Dr Orbach wishes for them to come to Boston in the near future (once they get insurance approvals) to have an angiogram done by him so he can get a better look as to what is going on. They were not told, but have a feeling that he saw something on his scan that was done in June that he didn't like. During this conversation they found out that the scan that was done in June that was supposed to be an MRI/MRA was actually an MRI/MRV.
So now they are waiting approval from insurance and then will need to figure out How they will be getting to Boston for this procedure as my sister just lost her job 3 weeks ago and was supposed to be starting a new one next week but now shes not sure if having to leave to have this procedure is going to affect that. And they wont have a date till Medicaid approves the out of state procedure. Please pray for my family.
If you’ve read this far, THANK YOU! If you can’t donate, PLEASE share ❣️ (Included below are his scans❣️)