Imagine being told that your son has an illness that has been recorded in only 100 children worldwide. Any diagnosis of epilepsy can come as a huge shock but for the Dyment family, to find out their son Justin has such a rare and debilitating form of epilepsy was extremely hard to bear.
Whilst there are many causes of epilepsy in infants, no one has yet discovered the cause of Migrating Partial Epilepsy and there are very few theories as to why it develops. It usually begins anywhere between the ages of two weeks and six months old with early seizures lasting between 30 seconds and a minute. However over time, seizure length and frequency tends to increase with some children having up to 50 seizures per day.
Unfortunately, the condition severely affects the infant’s motor and cognitive function, meaning their development suffers greatly. Some experts believe the reason for this is because seizures in this type of epilepsy are extremely difficult to control long term. Often improvements are seen but this only tends to last just a few weeks, before seizure frequency begins to rise once again.
Justin’s Story
In December 2007, aged just four months old, Justin had his first seizure and began to turn blue. He was rushed to Connecticut Children’s Medical Centre where he spent 24 hours in intensive care. From that date forward, he was hospitalized several times with repeated seizures, but it wasn’t until 7 months later that he was diagnosed by a specialist at Boston’s Children’s Hospital with Migrating Partial Epilepsy of Infancy.
Not only have Justin’s family had to come to terms with the diagnosis and help little Justin cope with his illness, they’ve also had to fight insurance companies to cover their out-of-state medical costs to receive care from specialists in the field. This is such a rare form of infant epilepsy that so little is known about it and the leading experts are spread far and wide.
For Justin, he has suffered developmental delays, with poor upper body strength leaving him struggling to hold his head up. He has had to endure countless tests, takes two medications three times a day and has hours of physical and occupational therapy. At two years old he does not crawl but his Mum is optimistic for her son and says he’s getting stronger day by day. His eye contact seems to be improving and he is trying to communicate by making a lot of noise!
Although experts believe Justin is only functioning at 33% of his potential, his family rally round and continue to try to find an answer for their son’s condition. As his Mum explains, “he is such a happy little boy and brings us so much joy. We will never give up hope on how much progress he will make and will continue to do everything we can to help him along the way.”
The courageous and dedicated Dyment family hope to bring more attention to Justin’s rare form of epilepsy and are actively involved in raising money for their local Epilepsy Foundation.
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