Elijah was born full term, the result of a pregnancy with absolutely no problems. He was a hefty weight and length and thrived from the beginning. He was never a good sleeper as a baby, but he grew and met all his milestones. He learned to walk, to run, to talk, to draw, to sing, to kick a ball, to make friends, to swim, to question. When he was 2 years old, he had his first seizure. We were told it was normal, that many children, when sick, will have a seizure as a result of a high fever. Then he got sick again, and he seized repeatedly all night, we couldn't keep his fever down enough to stop them. But when he got well they all stopped. We went on and were just always on alert to cool him off immediately should he get a fever, we were told he would grow out of it by age 5.
A few months later he started falling down. Just out of nowhere he would fall. We were sure he was being a normal sibling, trying to get attention away from his new baby sister. But within just a few weeks he started falling so frequently we couldn't let him walk anywhere on his own, we couldn't let him go outside, in the kitchen, near coffee tables, anywhere with a hard or sharp surface. We were sent immediately to a neurologist.
He was started right away on anti-seizure meds, and they worked. He also went through the normal testing, MRI, EEG, blood draws. Diagnosis was epilepsy, we were told many children grow out of it.
He then began to have behavior problems, worse sleeping problems, and he would get sick often. We just thought we had a "sickly" kid and thought nothing more of it.
We began to notice that he had a hard time learning things like colors or motor skills like riding a tricycle, so we had him evaluated by the school system. We were told he had ADHD and he was behind but once he got in preschool he would catch up.
He started preschool and he DID start to pick up on his skills, he loved going to school so much. But right before Christmas during that year he got the flu, and overnight, literally overnight, he stopped walking and talking.
The neurologist told us he had a virus in his brain and he would get better and get back to normal. The neurologist told us that month after month as he adjusted Elijah's meds, telling us that he just needed the right combination of medication and he would get back to normal. He did regain some of his skills, but it was temporary, and overnight lost them again. The last video we have of him walking on his own is from January 2011, when we were at the beach celebrating Aaron's birthday.
When he started preschool he was "normal", when he graduated preschool he couldn't talk, he couldn't walk unassisted, he had uncontrollable seizures, and if he wanted to play outside he had to wear a hard helmet with a face mask to protect his teeth.
Over that summer we switched neurologists. The new neurologist knew immediately what Elijah had, but of course we had to go through some extensive testing to confirm it. In the meantime Elijah started Kindergarten. He could no longer walk and had to start his school year out in a wheelchair. But he was still very interested in school, he could eat on his own, crawl around and play on the floor. By November that year we finally had our diagnosis and we knew he would never "outgrow" this.
When Elijah finished kindergarten he had a feeding tube, he had lost all his neck control, he couldn't sit up on the floor and play.
When Elijah started First grade, just a few months after graduating kindergarten, he no longer had hand control, he couldn't even hold onto a toy. And somewhere along the line he lost his sight.
Now he has almost no control of his body, besides moving his head side-to-side, his muscles contract into a curled up position constantly, he can't handle the secretions his body produces, he has seizures every day, sometimes he stops breathing. Every single time he leaves the house he needs: a wheelchair, a suction machine and various attachments, oxygen tank, an extra oxygen tank, oximeter, diapers, extra diapers, wipes, emergency seizure meds, comfort meds, formula, syringes, tubing for his feeding tube, nebulizer machine, extra clothes, leg braces, and more. He weighs over 50 lbs, his wheelchair weighs over 50 lbs, there's a lot of heaving lifting around our house.
One thing he does still have control over is his emotions, and he can show them to us through his eyes, through his lopsided smile, a grimace, or a moan.
Batten Disease is a fatal disease, it is always fatal, there is no cure. For more information about Batten Disease you can visit www.bdsra.org