More than 80 motorcycles are expected to take to the roads of Bartholomew, Brown, Jackson and Johnson counties Saturday for the fifth annual Bria’s Ride, a fundraiser for an Edinburgh child afflicted with a rare seizure disorder.
The ride is led and organized by Edinburgh’s Dave Sandlin, who along with wife Debbie is a close family friend of Kelli and Robby Clawson, whose 5-year-old daughter, Bria Jo, was recently diagnosed with CDKL5, a genetic disorder that affects only about 200 people worldwide.
“The Lord blessed me with a motorcycle, so I decided to put it to some good use,” said Dave Sandlin. Past rides have raised up to $10,000 to offset Bria’s medical and living expenses.
The ride will begin at Nash Tasty Shop in Edinburgh, stop at Papa’s Grill in Columbus, the American Legion in Seymour and the Brown County Inn before returning to the Tasty Shop, for a total of 130 miles.
Kelli Clawson said that from birth, Bria suffered from dozens of seizures per day. Doctors told Kelli and Robby that because her seizures affected all four portions of the brain, surgery to treat the seizures was not an option, and genetic testing to find the root cause can take years, as each chromosome must be tested individually.
“It was like looking for a needle in a haystack,” she said.
The diagnosis remained elusive until last spring, when a friend of the family — and Bria’s Ride participant — stumbled upon a YouTube video featuring a young girl whose condition and mannerisms were remarkably similar to Bria’s.
“It was just like watching Bria,” said Kelli.
A genetic test confirmed what Bria’s family already suspected: Bria has CDKL5, characterized by multiple, uncontrolled seizures and severely delayed development. The disorder is so rare, in fact, that the International Foundation for CDKL5 Research estimates that there are only about 200 diagnosed cases worldwide, though that number may increase as the condition is better understood; CDKL5 was only discovered in 2004.
“We wanted to know what was wrong,” said Kelli, “but on the flip side, knowing she may never walk...that’s hard.”
Treating her frequent seizures — as many as 30 to 40 a day during the worst periods — can be hit or miss as well. Kelli said that various medications will work for a while, one time even helping Bria stay seizure-free for three months, but because she is growing at the rate of a normal 5-year-old, even a minor weight gain can throw off the dosage.
“Even as a little as a one- or two-pound gain and we are right back to (the) hospital to readjust her dosage,” said Kelli.
Today, Bria’s seizures are controlled with medications and a Vagus nerve stimulator, or VNS, a pacemaker-like device which delivers mild electrical pulses to the brain that help lessen the length and severity of the seizures.
In the meantime, Kelli and Robby struggle to provide Bria, who started kindergarten at Eastside Elementary School this month, with as many opportunities to grow as she can.
Already Bria has achieved more than doctors initially predicted. She delighted onlookers at her first Christmas by reaching out and picking up her sippy cup. Horseback riding has increased her core strength significantly. She is even able to pull herself up on her knees, and seems to be on the cusp of crawling.
“She’s so complex,” says Debbie. “You know she’s in there and wants to do so much stuff, but she just can’t figure it out.”
All of this, of course, comes at a cost. Medication alone tops $400 each month, and her special tricycle cost $1,300.
And Kelli says that Bria doesn’t qualify for disability, so the majority of the expenses fall squarely on Kelli and Robby’s shoulders. “You just get tired of fighting,” said Kelli.
But for Kelli, Robby, Dave, and Debbie, plus a host of family, friends, and community members, giving up the fight simply isn’t option, and Bria’s progress only spurs them on more.
“There’s nothing that isn’t possible with her,” said Debbie.
If you go
What: Bria’s Ride
When: Saturday (Rain date Sunday)
Where: The ride will leave Nash’s Tasty Shop, 510 W. Center Cross St., Edinburgh, at 8 a.m.
Admission: $20 per bike; $10 per rider. Hog roast following ride is $7 per plate.
Send donations to Bria J. Clawson Trust Fund, “Seize the Seizures”, 307 Harrell Drive, Edinburgh, IN 46124.
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