Couple Hopes to Raise Angelman Syndrome Awareness - WSET.com - ABC13

Couple Hopes to Raise Angelman Syndrome Awareness

Updated:

A Sutherlin couple wants to raise awareness about a very rare condition, after spending many months trying to figure out what was wrong with their daughter.

It turns out she has a neuro-genetic disorder called Angelman Syndrome.  Symptoms include developmental delay, lack of speech and problems with balance laughter is also frequent in Angelman Syndrome.

Kenny and Heather Daniel say there's no better name for it because their daughter and others with it are sweet angels.

Two and a half year old Kendal Daniel always has a smile on her face.

"She's the light of my life... I couldn't imagine a day without her," Heather said.

It's Kendal's happiness that helps her parents. Heather and Kenny deal with the day to day struggles that come with Angelman Syndrome.

"It’s hard not to love that face," Kenny said.

The two say they noticed their daughter had some developmental delays. She didn't crawl until age one, and while she can walk a bit now, she still can't talk.

“When she was about I don’t know, 9 months old, we started noticing things weren't quite... :her motorskills weren’t picking up she wasn’t gaining some of her milestones that she should," Heather said.

Heather found some information on Angelman Syndrome on the internet.

"I knew. I knew in my heart the moment I read it. I think I come across it in like September. I knew then," she said.

Doctors confirmed the diagnosis in January of this year. The two say they struggled for many months. They don't want other parents to do the same.

"So many kids are misdiagnosed. There’s only 1 in 15, 000 that are diagnosed with Angelman Syndrome and so many are diagnosed with cerebral palsy or autism," Heather said.

Now that they know what it is, they're working hard to fight it and to help find a cure.

"My heart just tells me that there's an answer,"" Heather said.

ON THE WEB: 

Powered by WorldNow
All content © Copyright 2000 - 2014 WorldNow and WSET. All Rights Reserved.
For more information on this site, please read our Privacy Policy and Terms of Service.