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Closed 26/01/2023

Hailey's Hope for Sturge Weber Awareness

Hailey is an amazing 1 year old girl who has Sturge-Weber Syndrome (SWS).

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Closed 26/01/2023

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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.

Story

About Hailey

Hailey is an amazing 1 year old girl who has Sturge-Weber Syndrome (SWS). 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 cover part of the brain. Of those born with a Port Wine Birthmark, 3% will develop SWS. 1 in 50,000 babies are born with this disorder. Hailey is one of a small percentage who has both! This disease can cause seizures, developmental delays, glaucoma and many more health concerns.

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Donation summary

Total
US$1,685.00
Online
US$1,685.00
Offline
US$0.00
Direct
US$1,685.00
Fundraisers
US$0.00

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