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by Christina Echegaray | Posted on Thursday, Jul. 19, 2012 — 8:23 AM
His parents learned he had hydrocephalus. While the condition is as common as Down syndrome at birth, few people, including the Jacksons, have heard of it. Eliot, 13 months old, has had eights surgeries, and because no cure exists will likely have many more.
Hydrocephalus, which can occur at any age, is an abnormal accumulation of cerebrospinal fluid (CSF) within the brain’s cavities. It affects more than 1 million Americans.
Nashville will have a first-ever walk for hydrocephalus Saturday, July 28, raising awareness and support for research. The 5K walk begins 10 a.m. at Centennial Park. Festivities and registration begin at 7:30 a.m.
“Nashville has never had a walk for hydrocephalus. One of our patient’s moms started one in Chattanooga, and we thought ‘Why can’t we do this in Nashville?’ So we did,” said Melissa Arsenault, CNT, co-chair of the Nashville Hydrocephalus Walk. “I’ve dealt with a lot of these patients, many since birth. We have a personal connection.”
Vanderbilt has treated nearly 5,000 child and adult patients for hydrocephalus, including congenital and idiopathic (cause unknown) forms of the condition.
“I have a large number of patients, and if we can get even a fraction of that at the walk, it will be fantastic,” said Noel Tulipan, M.D., director of Pediatric Neurosurgery at the Monroe Carell Jr. Children’s Hospital at Vanderbilt. “The walk helps raise money for grants which we can apply for to conduct research.”
According to the Hydrocephalus Association, no significant improvement or progress has been made in the last 50 years for hydrocephalus treatments, preventions or cures. The most common therapy — a surgically implanted shunt to drain fluid in the brain — was developed in the 1950s.
The lack of progress disheartens Eliot’s mom, Elizabeth Jackson, who is organizing a team for the walk.
“There is a huge awareness gap,” Jackson said. “You worry about Down syndrome and all these things during pregnancy, but you have no clue about hydrocephalus. This is an opportunity for us to make a statement. Priority No. 1 in my heart for this walk is making sure people find out about it.”
Arsenault and fellow nurse Genia Hastings, LPN, organized the event through the Hydrocephalus Association. They hope it raises awareness and connects families. More than 50 teams have signed up. Children’s Hospital is a co-sponsor of the event.
“We want these families to know, ‘You are not the only ones out there dealing with hydrocephalus,’” said Hastings, chair of the Nashville walk. “These kids mean the world.”
To register for the walk, visit www.hydroassoc.org, click ‘walks’ and select Nashville.
Christina Echegaray, (615) 322-4747
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