Kelsey Shuber 's Moya Moya Journey

Many of you may know Kelsey Shuber and that she has been dealing with a diagnosis of MoyaMoya for the past 2.5 years; but you may not know everything she has gone through and what it is going to take to keep her healthy.

MoyaMoya is a disease of the blood vessels in the brain. Over time, without treatment, blood vessels shrink in the brain until the blood vessels are so small, the brain cannot get oxygen- causing strokes. Without treatment (which often includes surgery) the brain will continue to suffer without blood flow, until the patient has cognitive or physical decline from the brain damage.

Kelsey presented with a stroke when she was just 17 years old. Her scans since diagnosis suggest she has suffered as many as 4 additional strokes through the years that were not detected.

She has underwent countless scans, appointments, procedures, and 2 surgeries.

Unfortunately, the initial 2 surgeries to try to re-route her blood supply (called an indirect bypass) at Akron Children’s Hospital was not as successful as everyone hoped, and she is at risk for suffering more brain damage without another surgery.

As of right now, due to her previous strokes, she has issues with twitching in her arms and legs, worst in her right arm, weakness, numbness and severe headaches.

Luckily, there is an expert out there who can provide a better, more direct surgery to avoid further brain damage and prevent worsening of symptoms.

Kelsey was referred to Dr. Steinberg at Stanford Medical Center in Palo Alto, CA. Dr. Steinberg is an expert in MoyaMoya disease and surgery needed to restore blood flow. He has performed over 2,000 of these procedures and feels Kelsey is a great candidate.

Not only is Kelsey a great candidate for the surgery, but there is concern if she does not get the surgery soon, she could have another stroke. On her most recent scans, 4 additional previous small strokes were found, and without treatment soon, more are coming.

Dr. Steinberg’s team has recommended Kelsey to travel in just a few short weeks to California for her brain surgery. This surgery will use blood vessels from Kelsey’s scalp, to re-route and restore blood flow to her brain. Kelsey and her family just got this news and are doing everything possible to get her to California for the surgery seamlessly.

With the current cost of gas and travel costs rising, the travel alone for the procedure will cost thousands of dollars, which unfortunately is not covered by insurance. If you feel in your heart inclined to help Kelsey and her family, and take some of the financial stress off of an already very scary and stressful situation, we are asking for donations to help cover travel, medical, and care expenses for Kelsey and her upcoming surgery.

Lets help Kelsey kick MoyaMoya’s a** , because we all know this sky diving/ travelling/ risk taking girl is not going to give up!

We will use this page for updates on her surgery/recovery and arrival to California as well.

Kelsey will be traveling with her mom, Denise Marlin