Gianna's Fight Against MoyaMoya Disease

Hello Everyone!! My name is Amber, I am Gianna's mom! This is my daughter's story...

Three weeks ago we were driving home from a brain scan (MRI) for Gianna, talking about lunch & school and how well she cooperated for the scan itself when all of a sudden, the hospital called us to turn around and go to the emergency room!

See, Gianna was born with a genetic disorder called Neurofibromatosis Type 1 or NF1. This could result in tumors growing in the brain, spinal cord, and any nerve throughout the body. This affects 1 in about 3000 births. Having this disorder requires her to see specialists yearly such as Neurology and Ophthalmology for testing to ensure no tumors or gliomas have formed.

Gianna had been having regular headaches, learning difficulties (regardless of the many interventions we had in place), speech issues, and intermittent cognitive fog. I knew in my heart that there was something wrong! I requested this MRI from her neurologist after his many attempts to say she is fine.

As we were prioritized and triaged through the Emergency Room we found that Gianna has a tumor in her brain that is blocking the flow of cerebral spinal fluid and causing hydrocephalus. She was transferred via ambulance to Akron Childrens Main campus and admitted for a neurosurgery consult. Gianna had an Endoscopic Third Ventriculostomy surgery on 4/29/23 to fix the hydrocephalus. The surgery went well and Gianna is recovering phenomenally!

THIS WAS NOT THE END!

As ecstatic as we were that the surgery went well and she seemed to be doing a bit better, we feared that Gianna may have MoyaMoya disease...

MoyaMoya disease is an incurable progressive cerebrovascular disorder caused by blocked or narrowed arteries at the base of the brain.

We had testing scheduled for 5/12/23 to diagnose or rule out MoyaMoya disease.

Gianna’s left cerebral artery is completely blocked… She HAS MoyaMoya disease!

She has significantly decreased perfusion to the left side of her brain. Fortunately, her body has created collateral vessels to feed that area with blood & oxygen, but the risk of her having a stroke is very real… She is on Aspirin every day and has strict hydration protocols to reduce her risk until she can have surgery!

She will be having an angiogram on June 20th to see what vessels are perfusing to that side of the brain and also look for a donor blood vessel.

Gianna NEEDS to have brain revascularization surgery or she will not survive. This is a life-saving surgery!!! WE NEED HELP!!!

Akron Children's does not specialize in MoyaMoya & given the severity of this diagnosis and the need for positive outcomes of this surgery, we are opting to get a second opinion and travel to Boston Childrens Hospital!! Dr. Edward Smith at Boston Childrens Hospital is the best of the best when it comes to this particular diagnosis!! They do 50 of these revascularizations a year!!

It cost $1,150 out of pocket for a virtual neurology second opinion. We will get this second opinion and go from there, but Boston Children's is out of network for my insurance and they will only cover 50% of the costs. While I will give EVERYTHING I have for peace of mind that my daughter is going to be in the best hands possible, I am realizing that I can not do this alone!!

I don't ask for help often, but I'm asking for anything, if you can, to offset the second opinion cost, medical bills, travel expenses, post-op care, more medical bills, etc.

If you can't give, PLEASE SHARE!!! Get Gianna's story out there!!!

& please keep us in your thoughts because this has been the scariest road we have ever traveled down!