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
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’
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/
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/