Hi, my name is Angelica and I am Olivia's mom, and I was diagnosed with MoyaMoya disease in 2019 and underwent two brain surgeries.

We have been monitoring Olivia for this disease since she was little. Her first MRI/MRA scans were clear; she had a perfectly healthy brain! Now, however, she had a rushed MRI scan at ChaD on Wednesday, March 8th because she had been having horrible headaches.

Olivia's world changed forever that day, and she doesn't entirely understand it yet. Olivia's neurologist called me directly three hours after her scans and told me what I feared, that Olivia too has MoyaMoya disease. But, that wasn't all. Olivia's disease is far progressed like mine is, she has severe narrowing of the major arteries going to her brain.

MoyaMoya disease is a rare, progressive cerebrovascular disorder caused by blocked arteries at the base of the brain in an area called the basal ganglia. MoyaMoya means “puff of smoke” in Japanese and is used to describe the tangled appearance of tiny vessels compensating for the blockage. Essentially, her brain is being starved of blood, and because of that her brain created tiny little blood vessels to try to create more blood flow. Unfortunately, these tiny vessels are not nearly large or strong enough to provide the brain with the blood it needs, resulting in strokes and seizures.

Since Wednesday Olivia has seen numerous doctors and undergone multiple tests. She was referred to a Neurosurgeon at Boston Children's Hospital named Dr. Smith, he is one of the top MoyaMoya children's Neurosurgeons in the country. Boston Children's Hospital has a world-leading Neuroscience center for children, and one of the only ones with a MoyaMoya specialty.

As you can imagine this disease is aggressive and has to be treated immediately. Olivia will be seeing Neurosurgeons this coming week to do pre-op testing and schedule a surgery date within the next couple of weeks. Unfortunately, there isn't an 'easy' fix for this disease. There is no cure, no fix-all. This disease will constantly progress. The only way to aid in preventing massive strokes, and devastating health issues is to do brain surgery. In Olivia's case, it is bilaterally (both sides of her brain), and will require lengthy surgery time to re-route arteries from her face and scalp to her brain. The only way to help her brain is to promote more adequate blood flow means, by taking arteries from less-important areas and giving that blood to her brain. Meanwhile, she will be on life-long medications to be sure that her brain has every opportunity to thrive and heal as much as possible.

Olivia will have to learn a new life, one that is much different from what she knows as a happy six-year-old. Her life will be monitored through scans and appointments where she learns what her new 'normal' is. The goal of the surgeries is to give her brain more blood, but the road to that journey and recovery is HARD. Olivia will be missing substantial school time, possibly even the rest of her Kindergarten year as she recovers. She will have to shave her head to prepare for the surgeries, which we were told would be about 10 hours. She will stay in the ICU for a day or two and then be transferred to the Neurosurgery floor where she will stay for another week or so. Olivia will have to re-learn how to open her jaw and use it as the surgery cuts through those muscles and creates tension.

Olivia is the strongest, bravest little girl I know. She watched me at the age of two come home from my surgeries. I never wanted this for her, because I know what lies ahead, I know the pain, frustration, anger, and sadness she will face. But, at that I am also her best advocate because I have been there, I have done it, and I do currently fight it. Without my mom instincts telling me something was very wrong Tuesday I wouldn't have brought her to ChaD and she wouldn't have been scanned, and we wouldn't have known her brain is as bad off as it is.

So, with all of this, I am asking for help. I HATE asking for help. I don't like admitting that I cannot do everything myself. But, I've been told numerous times this week that I cannot do it alone. And after a few breakdowns, I may have realized it. The expenses coming with this fast, and very unplanned journey are becoming higher each day. The gas to and from the hospitals, hotels, food, and so much more. My husband, Olivia's father, is the sole provider in our family, and he wants to be with Olivia while she has her surgeries and to be able to help take care of her when she comes home. It isn't even just about him wanting to be there, he needs to be there for Olivia. As a single-income family, if he isn't working, bills are piling up, as well as hospital expenses.

Olivia loves school, her friends, her community, and her family. Right now more than ever she needs all the support she can get. Please, if you can, help us make that happen for her. She has a LONG recovery ahead of her and is asking for any help that anyone can offer. Thank you for any kind words, support, suggestions for hotels, etc. Everything raised from this will go towards bills while Olivia's dad is out during her surgery and recovery, as well as travel costs, housing costs, and any other costs that come along with her hospitalizations. I will post updates here for you to follow on her MoyaMoya journey, as well as information regarding MoyaMoya if you want to learn more.

Thank you from the bottom of our hearts for helping Olivia in her fight against MoyaMoya Disease!

Angelica, Michael & Olivia