Vivian and Harrison - Moyamoya Disease

Hi, my name is Vanessa and I’m fundraising for my 22 month old daughter Vivian.

Vivian is our spunky almost 2 year old daughter. Vivian loves dancing and listening to music. All things puppies and kitties, and her favorite people in the whole entire world are her dad and brothers.

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Vivian is now 2.5 years old, and Harrison is 7. Harrison passed away on May 13th, 2024 at 6 years old.

On July 29th, Vivian started experiencing episodes of left arm and hand weakness. My husband Harley and I immediately brought her to urgent care orthopedics, where based on what we knew and how it presented itself she was diagnosed with nursemaids elbow. A fairly common problem that parents of young kids have right around this age. We were shown how to properly correct it, and sent on our way.

For the next following days, the episodes would continue to happen. My husband and I did what we though was helping. These episodes would last about 10/20 minutes and would only effect her left arm/hand.

Fast forward to August 7th, Vivian had an episode of the left arm/hand weakness along with new foot/leg weakness. My husband and I immediately brought her back to urgent care orthopedics, where this time they did an X-ray of her arm/hand.

Each time we would leave the house with her having an episode, by the time we would get to the urgent care the episode would be done and she would be using her arm/hand properly again. We started to feel crazy, like maybe we were just being overprotective parents.

The doctor came examined her as well as her X-ray and showed us that physically her arm and hand were perfectly healthy. Again, leaving us feeling crazy. But this time, right before we were about to leave Vivian had another episode that the doctor was able to see for herself.

Vivian suddenly stopped using her left arm and hand, but was still communicating properly. The urgent care doctor recommended we go have her seen at Children’s Hospital Minneapolis, because the episodes she was having weren’t orthopedic related.

Children’s started by getting her hooked up to EEG monitoring, because they thought maybe she was having seizures. The following day they did an MRI of her head, where they found the worst news we would ever hear in our lives so far.

Vivian’s MRI showed that she had had several mini-strokes. Some old and some fresh. All the reason for her sudden weakness of the left arm and hand.

For a moment our whole entire world stopped. How can a 22 month old, a not even 2 year old, be having mini-strokes?!

The following day Vivian had a CT, which also showed persistent signs pointing towards Moyamoya Disease.

Moyamoya is a 1/1,000,000 disease that children are born with. Moyamoya disease is a rare blood vessel disorder in which the carotid artery in the skull becomes blocked or narrowed. The carotid artery is a major artery that brings blood to the brain. When it's blocked, blood flow to the brain is reduced. Tiny blood vessels then develop at the base of the brain in an attempt to supply the brain with blood.

The doctors started her on 2 different medications to help thin the blood and keep the blood vessels in her brain open.

The only way to 100% diagnosis Moyamoya is by Cerebral Angiogram.

August 31st, I brought Vivian back to Children’s for her Cerebral Angiogram to confirm diagnosis. Their findings were consistent with severe Moyamoya. Our next appointment would be with lead neurosurgeon Dr. Negib to discuss surgery options on our sweet girl.

On September 13th, Harley, Vivian and I sat down with Dr. Negib to talk about what no parent should ever have to. Surgery on her brain.

Dr. Negib explained to us that her case of Moyamoya is severe, and that surgery needs to happen and it needs to happen soon. He explained that she has little to no blood flow in several spots of her brain, explaining everything.

He explained to us that he wants to do an Indirect Bypass on the right side of her brain to give her brain a direct line of blood flow to the areas that for some time now had virtually none.

We soaked up all of the information that was given to us, and asked how soon we would be able to get in.

Vivian was given a surgery date of September 19th. She will spend several days following in the ICU and the step down ICU at Children’s.

Vivian continues to improve despite everything that the world has handed her. She doesn’t understand everything that’s going on, but is single-handedly the bravest little girl we have ever met. She continues to laugh, learn and some how keep up with her older brother.

These next few days leading up to surgery are going to be filled with a our family of 5 spending every moment we can together. We’ve learned in the absolute worst way possible to remember to always be grateful and thankful of what you have, and how quickly it can all be changed.

Our family has been incredibly blessed with an amazing support system. Wether it be family or our community, the outstanding love and support has been a blessing. We will never fully be able to express how truly thankful and grateful we are of everyone that has helped us thus far.

Our sweet girl has a LONG road ahead of herself.

Were starting this fundraiser to help with hospital costs.