This is my sweet little boy, Aiden. When he was born, he was noted as having a birthmark on the right side of his face. The attending pediatrician at the hospital told me that Aiden had a birthmark, either a hemangioma or a port-wine stain, but could not give me a definite diagnosis or information.

After arriving home from the hospital, I did some extensive research into both of these conditions. What I found was that neither of these conditions were simply birthmarks or just cosmetic issues, but medical conditions that required early diagnosis, evaluation and treatment to prevent further complications. Some of the information I came across was devastating. I found that if Aiden's lesion was indeed a port-wine stain he could develop glaucoma at any point in his lifetime, as part of his lesion is located on his eyelid. Frequent exams would be required for life. I also learned that Aiden's lesion was a marker for a rare disease called Sturge-Weber Syndrome as his lesion involves the first branch of the trigeminal nerve (the upper eyelid/forehead).

Aiden was diagnosed at 3 months old as having Sturge-Weber. This syndrome has indeed caused Aiden glaucoma, seizures, stroke, brain calcification and atrophy, developmental delays and hemiparesis. Therefore, he needs to be evaluated by a pediatric neurologist every 4 months and pediatric opthomologist every 3 months. Aiden's lesion needs to be treated using laser technology every 8 weeks to prevent the progression of these abnormal blood vessels which become problematic as he ages.

Aiden has recently been evaluated at UCLA to see if he's a candidate for a brain surgery called hemispherectomy. It's where they disconnect the two halves of the brain or remove one half completely. The purpose is to remove the damaged brain tissue and elminate seizures. We have just decided to go through with the surgery which will be scheduled late July/early August.

He has learned to crawl and walk with assistance. We are working hard to get him to walk on his own and talk. He has occupational, physical, speech and feeding therapy every week. He's had 14 laser treatments, as a result, his birthmark is 75% faded. People don't stare as much anymore, they just notice a happy boy and return his smiles. I appreciate when people ask about him instead of staring. I'll take any opportunity to educate people about this rare syndrome so that they will be more understanding when they encounter another individual with similar conditions.

I know Aiden's future is a bright one and I know he will make a difference in this world.

If you help Aiden and the Sturge-Weber Foundation it will aid in research, help educate families at yearly conferences, and maybe even one day find a cure or effective treatment.

Sturge-Weber has been deemed as an Orphan Disease by the National Organization of Rare Diseases (NORD). Sturge-Weber has not been researched by doctors and the medical community as much as other diseases due to the very few who have it. It is estimated that three of every 1000 newborns have a port wine stain birthmark, and of those 3-of-1000, between 8 and 16% will be diagnosed with Sturge- Weber syndrome.

Your donation will help Aiden in many, many ways. Including awareness and sponsorship for SWS related programs. The Foundation's commitment is to improve the quality of life and care for those affected by supporting individuals and families through guidance, advocacy, referrals and education while building partnerships to research the cause and management of Sturge-Weber Syndrome.

Thank you for visiting Aiden's fundraising page!

Donating through this website is simple, fast and totally secure. It is also the most efficient way to support Aiden's fundraising efforts.

Many thanks for your support -- and don't forget to forward this to anyone who you think might want to donate too!

To learn more about Aiden's condition, check out www.sturge-weber.org