CT Family Fighting To Bring Attention to Rare Form of Epilepsy

A Connecticut family is hoping to bring attention to their 14-month-old's rare form of infant epilepsy.
By: Heather Cavaliere
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* Vernon - Connecticut - US

Oct. 24, 2008 - PRLog -- VERNON, CT – Justin Dyment, who just turned one in August, has been suffering from a rare seizure disorder since he was four months old.  His family hopes to bring attention to this rare and severe type of epilepsy, especially with Epilepsy National Awareness Month taking place in November.

On December 20 of 2007, Justin was rushed by Life Star to Connecticut Children’s Medical Center while experiencing a seizure and turning blue. He spent 24 hours in the Pediatric Intensive Care Unit and then another 24 hours in the regular inpatient unit. Since then, he has had numerous hospitalizations in attempts to manage his epilepsy. On July 31, 2008, Justin was seen by a Pediatric Neurologist at Boston Children’s Hospital. It was a specialist in Boston who diagnosed Justin with an extremely rare and devastating form of infant epilepsy called Migrating Partial Epilepsy of Infancy. At this point, there are only around 100 cases diagnosed world-wide; therefore, very little is known about this form of epilepsy.  Justin’s family has had to fight with insurance companies in order to cover out-of-state medical costs just to receive care from specialists in other states. Justin has seen doctors at CCMC, Yale, and Boston and is scheduled for an appointment at the Philadelphia Children’s Hospital in January.

Migrating Partial Epilepsy of Infancy is a debilitating disease that can effect a child’s development. The condition often develops between the first couple of weeks through six months of life. Seizures can occur every day, with some children experiencing 10 to 50 seizures each day. To this date, no cause has been found to explain this type of epilepsy and it severely affects the young child’s motor and cognitive functions.

Justin’s condition has resulted in developmental delays, including poor upper body strength which makes it difficult for him to hold his head up. He has battled through countless tests and hours of physical therapy and occupational therapy each week and is currently taking two different medications three times a day, all with a smile on his face.

Justin’s family and friends have already raised money for the Epilepsy Foundation of Massachusetts/Rhode Island through the Annual Walk for Epilepsy in Massachusetts on May 4, 2008. The family is hoping to bring more local attention to Justin’s particular type of epilepsy. The family is already facing the fact that $54, 669 in funding was cut from the Department of Social Services budget in Connecticut earlier this year. According to the Connecticut’s Epilepsy Foundation’s website, the funds originally were used to provide information, education and support to an estimated 45,000 people in Connecticut who have epilepsy. The foundation also states that epilepsy is the third most common neurological disorder in the U.S. affecting more people than cerebral palsy, multiple sclerosis and Parkinson’s disease combined.

Friends and family of Justin, including his parents and older sister, have come together to plan a night of fun in support of Justin.  The family, who currently reside in Vernon, CT, has a long road ahead that will include medical expenses and other incurred expenses due to Justin’s disability. In an effort to raise money for Justin and his family, there is going to be a Charity Dance Benefit to support Justin’s Journey on Saturday, November 15, 2008, at the Manchester Country Club. The idea for a charity dance and dinner night was brainstormed by the mother’s co-workers as well as family and friends. Much of the night will only be possible due to donations from local businesses.

Justin’s cause will also be supported with a Thanksgiving Day Workout Charity Event, hosted by Jo Ann Huffman, a nationally certified instructor. Ms. Huffman has hosted this event for the past 10 years in an effort to help many families and organizations in need. All proceeds raised at this year’s Thanksgiving Day Workout will benefit Justin and his family. The class, which will be held at 10 A.M. at the Pitkin Community Center, 30 Greenfield St., Wethersfield, CT, will include aerobics, core work, and a cool down. There is a $10 admission fee for the charity event.

The family hopes to draw attention to this rare form of epilepsy and turn Justin’s struggle into a positive cause. More information on Justin Dyment’s medical and personal history can be found on his Caring Bridge website, http://www.caringbridge.org/visit/justindyment. The family is looking to bring attention to their son’s diagnosis as well as this rare form of epilepsy. For more information, please contact Heather Cavaliere via email at justinsjourney@sbcglobal.net. For more information on the Thanksgiving Day Workout, please contact the Pitkin Community Center at (860) 721-2950.
Email:Contact Author
Industry:Health, Family
Location:Vernon - Connecticut - United States
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