Sturge-Weber Foundation

Click on Aiden's picture above to see a video of his story...

The Vision of the Sturge-Weber Foundation is that in all areas of life – public, professional, personal – the following goals will be achievable for our members:

In Awareness – when the public will be able to see past the disability to the person. 

In Empowerment – when families and individuals will be able to obtain the medical care, employment, education, respect and personal achievement they seek.

In Research - when the pace of discovery will not be hampered by lack of resources and will lead continually toward a cure and advances in treatment.

Aiden is a champion of hope and he is one of the thousands of reasons we’re here. 

Aiden was born in February 2004 with a large birthmark on his face and scalp. The doctors called it a port wine stain and warned that Aiden might have glaucoma as the birthmark was also in his right eye. When he was just 2 months old he had his first eye surgery.  At three months Aiden had his first seizure and soon after was diagnosed with a rare neurological brain disorder called Sturge-Weber syndrome. When multiple anti-seizure medications failed to control his seizures, his doctors recommended a brain surgery called hemispherectomy. On August 21, 2008 Aiden, just 4 years old, underwent 11 hours
of surgery to remove the right half of his brain.

Aiden has been seizure free since that operation. He has learned to:

• walk independently
• feed himself
• drink from a straw
• draw circles
• walk up a flight of stairs

 

Aiden could not speak before his surgery. Today he has a growing vocabulary. Best of all, Aiden was taking 7 anti-seizure pills a day; now he doesn’t take any pills and he has kept his sweet, loving personality.