Angelman Syndrome, Life as an Angel

Sunday, March 23, 2008

Just wanted to post this article,about Brady, that was written in our local newspaper. It reads as follows:
Neighbors

Rare disease hasn't crushed boy's spirit

By Stephanie Nelson
Friday, March 21, 2008 11:38 PM CDT

Brady Fore has come a long way since Star-News readers first were introduced to the Andalusia resident and his family in 2005.

Diagnosed at 2 with Angelman Syndrome, the then-3-year-old was a pro at keeping his family both entertained and sleep-deprived since the syndrome from which Fore suffers manifests itself in symptoms such as frequent laughter, hands flapping, developmental delays and more importantly - seizures.

"When our son, Brady, was born, it was the second greatest day of our lives, the first being when my oldest son, Peyton, was born," said his mom Stephanie Fore. "Brady had a normal beginning in life; the future was bright and full of ideas. We knew right away that he was a perfect angel, little did we know how right we were."

Fore said she was plagued with feelings of "something not quite right" shortly after his May 21, 2002, birth.

It was more than two years until the Fores had an answer to the questions of what exactly was wrong with Brady.

"He wasn't making the milestones that babies are supposed to do," Fore said. "And then the seizures started."

Also starting was the family's distinct lack of presence in the Land of Nod.

"Sleep?" she asked. "If you had asked me that last week, I couldn't have told you, but on Wednesday, we had surgery that installed a Vegas Nerve Stimulator (VNS) and it's been a godsend."

Described as a device that "resets" the brain, it is credited with preventing Brady's seizures by sending electric impulses to the brain every four minutes.

"Doctors made a small incision on his chest and it's a wire that runs just under the skin to his neck and wraps around the Vegas nerve," Fore said. "He has slept through the night since he had the surgery."

And that's just the latest in a list of milestones Brady has accomplished.

When Brady was first introduced to readers, he could not walk and doctors predicted he never would.

They were wrong.

"He surprised everyone and started walking in October," Stephanie said. "Unaided, by himself. Life for us is just great. Used to he would stay awake all night, sleep about two hours after my husband went to work, and then was up until the next night.

"So when I say things are great, they really are great," she said.

Brady hopes to show off his skills in May during the annual Angelman Walk where he and his family will join others in bringing about awareness of the genetic condition that affects only about 20,000 people in the United States and Canada.

"We are doing the Angelman Walk in Mobile this year," Fore said. "It's going to be held Sat., May 17.

"We do these walks every year as an opportunity to bring parents together, share stories, as well as a chance to raise money for the Angelman Organization," she said. "It's so funny that a lot of times the same people who are on our support group, it's like we know them.

"Now we'll get to meet them the first time," she said.

The Fores are also seeking donations to help raise awareness about the rare syndrome. To read more about Brady's journey in life or to donate to his cause, visit his blog at http://sweetsweetangels.blogspot.com.

"I ask that you not feel sorry for Brady, but instead learn from him," Fore said. "He will most likely lead a better life than most of us. He draws anyone who meets him near and makes new friends wherever he goes.

"He has a huge loving, supportive group of friends and family members, great therapists and a great pediatrician," she said. "He has an exceptional big brother that looks out for him. We are truly lucky. God has blessed many people's lives through our little Angel.

"What more could we ask for?"

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What is Angelman Syndrome?

About Brady

Read Brady's Story Here

I am 11yrs old and I have Angelman Syndrome. I may have this syndrome, but I dont let it hold me back. I love life and live it to the fullest every single day. My mom says that our research organization, Foundation for Angelman Syndrome Therapeutics, is working really hard on a treatment or even a cure for me and my friends. I am thankful to have 25 words but I look forward to the day that I can carry on long conversations and talk so much that everybody has to ask me to please be quiet for a few minutes :) Anyway, mom says Im awesome and super funny and I have to agree,lol.

See my complete profile

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