Through all of Ben’s 19 years and now, his mom, Sallieann Gould, struggled and continues to fight to get Ben and her family the support and services they need for coping with Ben’s epilepsy and learning disabilities. He began having seizures when he was five days old.
Ben has Lennox–Gastaut Syndrome, one of the most rare and difficult to treat childhood epilepsy syndromes. The disorder is marked by having cognitive impairment and multiple types of drug resistant seizures.
With his disorder, Ben may have as many as a hundred seizures in a cluster, one after another. The only treatment available is the rectal administration of the tranquilizer, diazepam.
Education System Failed Disabled Child
According to his mom, Ben suffered bullying and taunting at schools he attended. He was neglected by those who were supposed to protect him at school and help him when he had seizures.
“I had to fight,” Sallieann says, “to get teachers trained on the administration of rectal diazepam. Even when they were trained, they never would administer it. Their protocol was to phone me and an ambulance at the slightest twitch. He missed a lot of school.”
Attempts to keep Ben in a mainstream school were a nightmare. "His last day there, he came home with a trainer (shoe) print on his face. I home schooled him for a while."
The abuse he endured at various schools became so traumatizing, Sallieann decided to remove Ben from school altogether.
Each Day is a Struggle
“Epilepsy,” Sallieann says, “impacts on everyday life in every way possible. I am unable to work, I do receive caregiver's allowance for my 24/7 care that works out as £3.12 per hour (about $4.15 in US dollars).
“I can’t travel I don’t drive, and even if I did, we are not eligible for a blue badge (help with transportation) as he can walk – and run in front of cars.”
Sallieann continues, “Family life is difficult as you can imagine. Ben’s seizures now are mainly nocturnal and, as his caregiver, I spend many a night camped on his bedroom floor. I have a torn ligament in my shoulders and constant back pain from lifting and turning.
“I have two daughters who have had to grow up living with this situation, not a lot of money to take them out and no time to do it in. Family and friends have lost interest, not that they had much to begin with. I haven’t received a lot of support at all.
“We tried epilepsy clubs. They are great for children who have epilepsy well controlled. Although they are living with the condition and medication side effects, they are the best case scenario kids.
“But for someone like Ben, who is more interested in playing top trumps and collecting Pokemon cards, rather than mobile phones and girls, there is nothing at all.”
Nor is there support for Sallieann, her partner, or Ben’s sisters.
Moms Team Up to Form Web Page and Fundraising Group
In 2010 Sallieann and Vicki Evans, whose daughter has Dravet Syndrome, joined forces and established a website and fundraising group for anyone with epilepsy. Summing up what these moms think of living with seizure disorders, they named the group Epilepsy Sucks, UK (ESUK). The aim of the group is to provide support, education, and advocacy for change to improve the care and lives of those who have epilepsy.
Their first major project is an ongoing program to provide free anti-suffocation pillows to anyone in the UK who may need one. These are designed to prevent suffocation which could happen in minutes if someone gets trapped in a regular pillow during a seizure.
They are working to provide the information healthcare providers often fail to give their patients. This includes information about anticonvulsants and their nutritional and other side effects.
ESUK is promoting an online petition to demand that school employees be trained to provide appropriate treatment to children when they have seizures. ESUK’s page contains over a dozen documents to educate others about epilepsy and resources for those who have seizure disorders.
After doing her own internet searching, Sallieann made changes in Ben’s diet she believes are improving his seizure control.
“I feel my son’s epilepsy is controlled,” she states, “but in the least harmful way with a combination of anti-epileptic medication, nutrition, and supplementation of amino acids. So many could benefit if nutritionists worked alongside neurologists.”
Sallieann started a facebook group, M.A.T.E., to discuss and share information on the dietary changes she and others find useful in treating epilepsy.
Out of her many years of advocating for her son, Sallieann speaks of the need for everyone dealing with seizure disorders to be involved in helping those who have them.
“The bottom line is we all need more support for those who have difficult to control epilepsy and the family affected by it need it the most. Parents and patients must be allowed to lead treatment.”
Zoe Langley - Zoe Langley is a writer living in Kentucky. She is a past winner of the Seattle Writers in Performance Award. She has a passionate ...
Join the Conversation