May 16, 2019 our 4 year old, Kalea Rose, was diagnosed with Moyamoya Disease (a rare brain disease). Consistent with our fears, following a MRI, the neurologist called with the news that our "intuitions were correct". We took a deep breath, and trusted Dr. Smith's knowledge, expertise, experience, and abilities to lead us through Kalea's treatment. We've never looked back or doubted our choice of doctor or hospital. June 2019 she underwent her first surgery, December 2020 she had her second, & August 2021 she had her third.
Our mission is to change diagnosis outcomes through research. We can do it, and our family’s experience is proof.
Kalea's cousin was diagnosed 15 years ago with the Moyamoya disease as well (he is also treated by Dr. Smith). His family's efforts inspired our event. Without fundraising, genetic testing advances would not have been made.
Our first fundraiser's proceeds went to research on new procedures that Kalea has already benefited from in her second & third surgeries. This past year, Dr. Smith led further research discovering an additional gene strand in which the disease is linked to. We hope to continue contributing toward further efforts.
Thankfully Kalea’s multiple surgeries have helped, but unfortunately her fight is not over. This is a progressive disease without a cure, & Kalea will be continually dealing with its effects on her body. Kalea is a fighter, and she has a team. Thank you for being here, reading about us and joining our team. We are determined to pay forward the fundraising that has benefitted our daughter and so many others. We speak from experience when we say, your donation changes everything.