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Paulding family uses Facebook for help with boy's rare condition
by Savannah Weeks
sweeks@neighbornewspapers.com
July 19, 2012 10:26 AM | 2886 views | 1 1 comments | 23 23 recommendations | email to a friend | print
Parker Graham plays video games inside his home last week. Parker has a condition known as congenital insensitivity to pain and is limited to indoor activities most days.
Parker Graham plays video games inside his home last week. Parker has a condition known as congenital insensitivity to pain and is limited to indoor activities most days.
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Parker Graham attends Poole Elementary School in Paulding County and is like any other young student — except when he falls and doesn’t feel it.

Parker, 10, has a rare condition called congenital insensitivity to pain, according to his mother and father, Onva and Cooper Graham of Dallas.

Onva Graham said she knew from the time Parker was a newborn that something was abnormal, but it took doctors nine years to diagnose him with the condition.

People with his disorder don’t have hunger pains and do not know when they need to eat, according to Ms. Graham.

Over the course of his 10-year life, Parker has broken his ankles 13 times, broken both elbows, his nose multiple times and both wrists, his mother said.

The Grahams reached a breaking point when Parker fractured his ankle during a physical therapy session.

“His physical therapist pulled me aside and just said, ‘Look, I think there is something else going on here,’” Ms. Graham said.

Parker had previously been diagnosed with sensory integration disorder — a condition which scrambles sensory signals to the brain.

“He [Parker] was really aggravated with me for pulling him out of [physical therapy],” she said. “He wanted to keep going, because he didn’t hurt.”

Ms. Graham was convinced Parker had congenital insensitivity to pain, but doctors locally said that since he was able to sweat it was not possible. Most children with the condition are unable to sweat.

The determined mother finally reached out for help through different methods. Through the Internet, she found other families whose children have Parker’s condition. After reaching out to a mother on Facebook, she finally got a response and the support she had been looking for.

She then joined a Facebook group for families dealing with the condition.

“There are only about 75 people in the group, and that’s worldwide,” Graham said.

Through this group, the couple learned of Dr. Felicia Axelrod at New York University, who specializes in disorders like Parker’s.

The Grahams raised enough money through their church, Elevate Christian Church in Hiram, and fundraisers to take Parker to New York where he was finally diagnosed with congenital insensitivity to pain with hyperhidrosis.

“Even though there are no cures for the condition, just finally having my instincts validated and having support was such a relief,” Ms. Graham said.

Parker and his family attended their first “Camp Painless but Hopeful” at Camp Twin Lakes in Winder in November, and are making efforts to raise money for the camp now.

Huey Luey’s restaurant, in Hiram, is hosting a percentage night Aug. 16 from 4 to 9 p.m. The restaurant will give 15 percent of sales to the camp from any customer who tells them they’re there to support it..

Donations can also be mailed directly to the camp. For more information, visit camppainlessbuthopeful.org.

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Onva Graham
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July 19, 2012
The camp's website is actually www.painlessbuthopeful.org . Thank you!
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