A chance to run or walk while supporting a great cause is coming to Fayetteville. The Run for Infantile Scoliosis is a 5K race happening June 8.
Progressive Infantile Scoliosis happens mainly in young children, but there have been cases where it has affected older children. When the spine curves abnormally it is called scoliosis, but in little children and babies, it is called progressive because, if not treated properly, it will continue to grow abnormally and surgery is necessary.
Rachel Jacobs, event director, has personal experience with infantile scoliosis. Her daughter was diagnosed with it when she was only 4 months old. Jacobs did not opt for surgery.
“It doesn’t really work, or correct the spine,” she said.
Instead she went with the treatment offered by Dr. Min Mehta, a retired orthopedic surgeon from London. The procedure is a cast. The child is sedated and put on a 3-D casting frame. This allows for elongation and traction when placing the cast around the child; it is placed above the hips and below the shoulders. The doctor can correct the rotation by gently maneuvering the spine with his hand. Children are not conﬁ ned in the cast; they can still run, play, wear normal diapers and do regular activities. The success from this casting method is unbelievable. Jacob’s daughter was put in the cast, making her child one of the youngest children ever. She was then casted every six weeks and she went from a spinal curvature of 41 degrees to just 10. “This literally is a cure if caught early enough. My daughter has it, is still being treated and has had greater success than we could’ve imagined.”
“This is me paying it forward-and I enjoy running.” Jacobs said. All the proceeds will go to the Infantile Scoliosis Outreach Program, a non-proﬁt organization in Denver, Colo., that strives to supply resources and information for families with children of progressive infantile scoliosis.
Heather Montoya, another mother who has been impacted by progressive infantile scoliosis, founded the organization. Her daughter, Olivia, was diagnosed at 5 months in 1998. The only answer that was given to her was the standard surgery to fuse the spine to stop progression. This, however, is life threatening because it causes no room for other vital organs to grow in the body.
“My maternal instinct was saying no. I knew that couldn’t be the way to go. I needed to ﬁnd something to help my baby,” Montoya said.
By the time she was 2 years old, Olivia’s spine was already curved at 100 degrees, which could possibly crush her lungs or heart and end up killing her. Heather jumped through hoops and sent x-rays all over the world, but all the doctors she contacted suggested the fusion surgery. Through a few doctors in Colorado she learned of the procedure called halo gravity traction, a procedure done in France by Dr. Jean Dubousset. The child is put in a turnbuckle case under anesthesia and a horseshoe shaped metal bar is placed around the skull, like a halo. It is put into place by pins and weights are attached and slowly increased to safely straighten the spine. Olivia was able to receive this treatment. The best part? It worked. The curvature of her spine was cut in half, from 100 degrees to 42 degrees. This was only to buy valuable growth time. Olivia has had to go through more casting and a damaging surgery. This led Montoya to start the website called infantilescholiosis.com, knowing there must be more families in the same situation.
The organization and the race are all about spreading awareness in the community and education. Live music has been planned and there are picnic benches for relaxing. “A lot of people have said they were coming. You won’t regret it if you come out. Your knowledge and exposure from this can help someone else,” Jacobs said.
The race is to take place in Honeycutt Park on Saturday, June 8 at 8:30 a.m. There is a $20 online registration fee before June 5 and $25 the day of the race. Race T-shirts are limited to the ﬁ rst 250 online registrants.
To register online visit this website: www.active.com/running/fayetteville-nc/run-for-infantile-scoliosis-2013. To ﬁnd out more about Infantile Scoliosis Outreach Program, visit www.infantilescoliosis.org