The 2nd Annual HOPEfest on Oct. 11, 2008 raised more than $14,000 to benefit the Infantile Scoliosis Outreach Program (ISOP) and Grayson-Carroll Shriners.
Jennifer and Brandon Davis, of Galax, organized the event because the couple’s 3-year-old son Evan developed infantile scoliosis at three months of age.
After spending all but three months of his life in casts and braces, Evan is hopefully done.
“He had a series of eight casts and one brace,” said Jennifer. “Now he will have routine check-ups every nine to 12 months until he is fully grown.”
The annual festival featured several musicians, food and a silent auction. While the crowd – estimated at 200 people – was a bit smaller than expected, Jenny said she was pleased with the turnout.
Money raised during last year’s event trained surgeons and technicians from children’s hospitals in Chicago, New York and Sydney, Australia. Money this year is expected to do the same in other locations.
“We don’t know where it will go yet,” Jenny said. “But it will help train more doctors.”
Evan’s infantile scoliosis is a rare condition. In fact, only 1 out of 10,000 children are diagnosed with it.
A condition that usually is associated with teens and adults, scoliosis is a condition where the spine doesn’t grow straight, but curves and twists.
A close friend of the families’ was first to notice Evan displaying some characteristics of scoliosis when he was four months old.
Jenny said she and Brandon referred the concern to his pediatrician and, after being evaluated, Evan was diagnosed with infantile scoliosis.
The most common corrective treatments require surgery and/or bracing. After doing some research, the couple learned about an unconventional, non-surgical procedure through ISOP.
“We shared the scientific evidence that I received from the ISOP on Dr. [Min] Mehta’s early treatment method with many doctors in our area,” Jenny said. “Unfortunately, our local physicians recommended the ‘wait and watch’ approach, followed by bracing and surgery.”
Waiting and watching was not acceptable for the Davises. They chose to look elsewhere for treatment.
The procedure they chose used a series of corrective plaster casts to straighten the spine – similar to what braces do for crooked teeth.
The couple decided to take Evan to Shriners Hospital for Children in Erie, Penn., to be evaluated by a surgeon who had recently been trained by Dr. Mehta on the principles of early treatment and how to properly apply a series of plaster jackets on the appropriate child-sized equipment.
On March 14, 2006, Evan was placed in the first of his series of plaster jackets.
Before treatment began, Evan’s curvature was at 46 degrees and the rotation of his ribs was a severe 64 degrees.
“Our last visit to the doctor in August revealed his curve measured only 10 degrees with minimal to no rotation and now he is brace-free,” Jenny said. “We are eternally grateful to ISOP, Dr. Mehta and the early treatment that [Evan] has received.”
Dr. Mehta, a retired doctor from the Royal National Orthopaedic Hospital in London and Stanmore, England, invented the treatment and, along with ISOP, teaches and encourages U.S. doctors to adopt her technique in correcting infantile scoliosis.
The key to this kind of treatment is early diagnosis and treatment. Children grow rapidly in infancy – but after age two, growth slows. Fitting a child with a cast helps teach the spine to grow straight.
Monique Garcia started a sister organization in Australia after her son was diagnosed with infantile scoliosis – unfortunately it was too late in the progression.
“Evan was a very lucky little boy,” Garcia said during HOPEfest. “I have a little boy… Nathan… he’s only 5-years-old… but he’s dying.”
Garcia said he had a curve on his spine that was detected early, but doctors sat and watched. She now sits and watches as her son’s condition worsens – until it eventually puts too much pressure on his lungs and they collapse.
“This is everything to us,” she told everyone who attended and helped contribute. “Thank you for understanding how important you are to this cause.”
ISOP was founded by Denver native Heather Hyatt , whose daughter Olivia developed infantile scoliosis shortly after birth.
“It’s dedication like this that has enabled ISOP to train surgeons around the world,” Hyatt said at HOPEfest. “You all are helping make this procedure available to every child that needs it.”
Evan’s father Brandon, a guitarist, was one of the many musicians who performed during the event and said he was eternally grateful to those in attendance.
“When Evan was first diagnosed we were not sure of our options,” he said. “We went to the good Lord and today Evan is okay.”
The Davises plan to hold the event again next year – probably in the spring or early-summer months.
Jenny thanked all the musicians who donated their time, as well as the countless volunteers and the Grayson-Carroll Shriners for all their support.
“We could not have done it without [all the volunteers],” she said.
Grayson Reporter – The Gazette