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Man Walks 32 Miles to Raise Awareness for Incurable Brain Condition
  • USA - English


News provided by

Hydrocephalus Association

Aug 08, 2014, 03:00 ET

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This journey is not just for me, or even for the children of Michigan,” stated Alley. “It’s for children and parents everywhere affected by this life-threatening and life-changing condition. It’s for everyone needing support.

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Allen Park, MI (PRWEB) August 08, 2014 -- AJ Alley will walk 32 miles to raise awareness for hydrocephalus, a neurological condition that has no cure and where the only treatment option requires brain surgery. This is a personal challenge for Alley, as he was diagnosed with hydrocephalus on Christmas morning 1978 at the age of 8. To treat his hydrocephalus, a condition in which cerebrospinal fluid accumulates in the brain, Alley had a shunt implanted to drain the fluid from his brain to his abdominal area. He will begin his walk on August 17, 2014, through Lower Huron Metro Parks. He is walking to increase awareness of hydrocephalus and to raise money for the Hydrocephalus Association (HA) to support critical research initiatives into better treatment options and a cure as well as to sustain its educational and support services that help improve the lives of those affected by the condition.

“This journey is not just for me, or even for the children of Michigan,” stated Alley. “It’s for children and parents everywhere affected by this life-threatening and life-changing condition. It’s for everyone needing support. Anyone at any age can be diagnosed with hydrocephalus. There is no prevention and, as yet, there is no cure.”

Alley is all too familiar with the challenges posed by hydrocephalus. When he was first diagnosed that Christmas morning in 1978, he was a frightened 8 year old boy unable to lift himself from bed. His parents rushed him to the hospital and were given the diagnosis of hydrocephalus, a word they had never heard but quickly learned meant a life-long chronic condition that would relegate their son to repeated brain surgeries and possible secondary challenges such as learning disabilities, memory issues, and vision impairments. He was surgically treated with a shunt, a medical device that has a 50% failure rate in children within the first two years of placement. Alley was fortunate in that he only endured one additional shunt revision as a child and then did not have to confront another surgical intervention until he was 35 years old.

“I was working as a videographer for a major attraction in Florida. The build-up of fluid in my brain affected my optic nerve – my eyesight was dangerously fading – and my coordination was off. After many tests I was told my shunt was failing and my life was in danger once again. The doctors said the surgery was risky and I might not survive it. I did survive it – and it was a success – thanks to the wonderful medical professionals, who held my brain and my future in their hands that day,” shares Alley.

Alley is committed to raising awareness for hydrocephalus for the hundreds of thousands of children currently living with the condition and who have endured countless brain surgeries. Hydrocephalus is the leading cause of brain surgery in children and it is not uncommon for children to have more brain surgeries than birthdays. Alley welcomes support. To sponsor Alley, visit http://HAextremeathletes.kintera.org. Interested sponsors can also go to the Hydrocephalus Association’s web page (http://www.hydroassoc.org), select “Get Involved,” choose “Marathons”, then select “Sponsor a Participant.” Search for AJ Alley to go to his personal webpage.

About the Hydrocephalus Association:
Founded in 1983 by parents of children with hydrocephalus, the Hydrocephalus Association has grown to be the nation’s largest and most widely respected organization dedicated to hydrocephalus. All Hydrocephalus Association WALKs are volunteer initiated and volunteer coordinated. Last year’s Hydrocephalus Association WALKs raised more than $1 million from over 10,000 walkers participating at 30 sites across the country. For more information, visit the Hydrocephalus Association web site at http://www.hydroassoc.org or call (888) 598-3789.

Amanda Garzon, Hydrocephalus Association, http://www.hydroassoc.org, (301) 202-3811 Ext: 26, [email protected]

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