Charity walk to highlight tough-to-diagnose disorder

As a mother of four, Henderson native Tina Tannehill says each of her children is special, but one is an angel.

Eleven-year-old Jace was diagnosed with Angelman Syndrome almost nine years ago. Since then, his family has rallied around him and participated in the annual AS charity walk.

“Our walk team is ‘Team Jace: We walk because you rock,’ ” Tannehill said.

The national Angelman Syndrome Foundation plans a fundraiser walk from 8 a.m. to noon May 16 at Cornerstone Park, 1600 Wigwam Parkway. The event is one of 36 planned across the nation.

The syndrome is a neurogenic disorder that can cause seizures, developmental delay, absence of speech and fine and gross motor disabilities. Affecting one in every 15,000 births, there are about 10 families in the valley living with a member who has AS, according to event coordinator Grace Samson.

“It is presumed to be rare; however, some cases are misdiagnosed as autism or cerebral palsy,” she said. “This is the No. 1 reason why we do the walk. We need to raise awareness about AS and promote early and accurate diagnosis.”

Shortly after Samson’s 10-year-old son Evan was diagnosed with AS, the family attended a charity walk in California in 2006. Feeling a new sense of support, Samson decided to host a similar event in the valley the following year.

“The experience we have gained going to our first walk in Orange County is immeasurable and worth sharing over and over if I can,” Samson said. “I have learned that no matter how families endure rough times raising a family member with AS, they are capable of being happy again.”

Tannehill connected with Samson through the foundation’s database after her son was diagnosed.

“After Jace was born, he wasn’t absorbing nutrients and became very frail,” Tannehill said. “From there, he lacked milestones. He was sitting at 20 months, crawling at 2 and walking at 4.”

Although he’s still nonverbal, Jace is learning to communicate through his iPad using photos.

“It gives a voice to these children. It’s an outlet, really,” Tannehill said. “Through the iPad, I know his taste in music and movies now. I know he loves In-N-Out burgers and cheesecake. We’re beginning to learn who they really are.”

This year’s events have attracted more than 8,000 participants and raised more than $450,000 nationwide.

“This is an annual event that we look forward to each year. We can’t do this alone,” Samson said. “We walk because we love our angels. We have hope because all of them give us reasons to smile.”

The cost is $25 per person, and all proceeds are sent to the foundation. For more information or to register, visit angelman.org/walk.

To reach Henderson View reporter Caitlyn Belcher, email cbelcher@viewnews.com or call 702-383-0403. Find her on twitter: @caitlynbelcher.