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Closed 15/05/2024
Sturge-Weber Foundation

2nd Annual Hailey's Hope For Sturge Weber Awareness 2023 Fun Run

Hailey's Hope for Sturge-Weber Awareness was created to raise awareness about Sturge-Weber Syndrome and disability inclusion. Our hope is to raise money through the Fun Run to help The Sturge-Weber Foundation.
by 8 supporters
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Closed on 15/05/2024
RCN 742485813

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Hailey is an amazing 2 year old girl who has Sturge-Weber Syndrome. Sturge-Weber Syndrome (SWS) is a progressive neurological disorder that is very rare. The most visible part of the disease is a Port Wine Birthmark. It is created by enlarged blood vessels that can can cover part of the brain. Of those born with a Port Wine Birthmark 3% will develop Sturge-Weber Syndrome. 1 in 50,000 babies are born with SWS. Hailey is one of a small percentage who has both! This disease can cause seizures, developmental delays, glaucoma and many more health concerns.

Our beautiful daughter was diagnosed with this disease at less than a week old. We received this diagnosis while she was in the NICU. She had her first seizure at 24 hours old. She was in and out of the hospital many times over the first 19 months of her life and has had too many seizures to count. Because of these seizures and because of how her brain is affected by the disease, Hailey has delays in her physical, motor and verbal skills. Because of her struggles and knowing the affects of the disease, we decided to host our first ever 5k Fun Run to raise awareness of the disease and raise money to help further research and help others affected by SWS. All proceeds will benefit The Sturge-Weber Foundation.

About the charity

We exist to improve the quality of life and care for people with Sturge-Weber syndrome and associated Port Wine Birthmark conditions. We support them with collaborative education and advocacy in tandem with translational research as we promote effective management and awareness.

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