Another one of our amazing Warrior Ambassador Families:
Meet the Pentecost Family
Mark & Laura
Payton Age 11
Parker Age 6 Turning 7 August 11th
Parker was diagnosed with epilepsy in 2012 at the age of 3. He was given the diagnosis of a rare form of epilepsy called Doose Syndrome along with SCN1A Mutation. On a side note after having some genetic testing done, I his Mom also carry the SCN1A mutation and had a seizure the year his seizures started. Doose Syndrome is the only diagnosis that is even CLOSE to Parker’s struggles. They have no name for what he has. There is only one other person also a young boy that has what he has and presents itself in the same way. There are many other “side notes” to this thing we call epilepsy.
Doose Syndrome: Also known as Myoclonic-Astatic Epilepsy (MAE) is an epilepsy syndrome of early childhood that is often resistant to medication. For this reason, it can be difficult to treat. MAE is idiopathic generalized epilepsy, meaning that there is no known cause for the seizures (idiopathic) and the seizures originate from all over the brain (generalized) as opposed to coming from one focal area. The onset of MAE occurs commonly in the first five years of life, with the mean age being three. Statistics show that it usually affects children who have previously developed normally, and boys are twice as likely as girls to develop MAE. In some cases, other family members (immediate or extended) may also have seizures.
SCN1A Mutation: Generalized epilepsies caused by mutation of SCN1A are most often tonic, clonic, tonic-clonic, myoclonic, or absence. Generalized epilepsy with febrile seizures plus (GEFS+).This term refers to the findings in a family rather than an individual
We have had a very long road with Parker, it breaks our hearts knowing how much we love our children but unable to do the things we would like to do if we could afford them. Epilepsy affects everything. We put all our resources into Parker’s care. It reduced our income by half, as I his Mom am his full-time caregiver. The cost of his medications has forced us to make many tough decisions but we made them happily because it’s what you do when you love your children so much.
Some of the main struggles we face are that everything is different. Where we can go, what we can do, how we do things, what we can afford to do. The cost of adaptive equipment is outrageously priced, and who we are as a whole has also changed. What I would like to see advocated most about epilepsy are the different types the fact that there is not a look to epilepsy, so you may not see it visually in a person. I want to see more proper responses to seizures.
I would like to see the multitude of differences spoken about as I find the general population only thinks of the Grand Mal when they think of seizures.
Grand Mal: Also known as a generalized tonic-clonic seizure — features a loss of consciousness and violent muscle contractions. It’s the type of seizure most people picture when they think about seizures in general.
Grand mal seizure is caused by abnormal electrical activity throughout the brain. Most of the time grand mal seizure is caused by epilepsy. In some cases, however, this type of seizure is triggered by other health problems, such as extremely low blood sugar, high fever or a stroke.
Many people who have a grand mal seizure will never have another one. However, some people need daily anti-seizure medications to control and prevent future grand mal seizure.
We all know full well that there is A LOT more than that to epilepsy. We struggle to do things with our Daughter Payton alone, just the 3 of us. She also struggles (wishes) she could do more things with him. Having equipment that Parker can use swings, bikes and the like are what she really wishes for. The price of these things is just right now so far beyond our reach.
If you would like to help us or any of the Ambassador Warrior families chosen through the Epilepsy Warriors Foundations Ambassador Program you can do so through this website. Thank you for your support, understanding towards all of us.