(November 6, 1995-February 26, 2015)
Roeland Park, Kansas
Until about 6 months ago, my daughter Jessica’s life was just like any other 15 year old teenage girl. The morning of April 26, 2011 began like other days. Jessica and her two sisters were getting ready for school when Jessica fell to the ground and had a Tonic Clonic (Grand Mal) seizure.
We took Jessica to the ER where she was checked out and sent home. Over the next few days, she acted as though nothing had happened. I was hoping that this was a onetime seizure and that, perhaps, the seizure was related to the stress of being in a new school district.
Two weeks later, I noticed that when she walked, she would trip and fall and she started having myoclonic seizures (jerking in the arms and legs). Jessica was getting dizzy and shaky and she soon had almost constant myoclonic seizures; her poor body was never still and free of the jerking.
I called the neurologist and she expedited the order for an EEG; the neurologist told me, after examining the results of the EEG, that Jessica had Generalized Epilepsy. I was devastated and began to cry. The neurologist looked directly at me and said that this is not a big deal- that with the proper medications, Jessica would be absolutely fine and completely normal. It appeared, at first, that she was absolutely right.
After a month of taking the anti-seizure medications, Jessica got very depressed and angry. The doctor explained that those emotions were a side effect of the medication and that the situation would improve. Jessica, however, was crying all the time, and she was acting very mean to her sisters.
We noticed, at the same time, that it seemed as though Jessica couldn’t see very well and that reading was becoming increasingly difficult; her cognition was beginning to decline.
The doctor continued to say that the seizure activity was the cause of her cognitive decline and she upped her dosage of her meds. The doctor ordered an MRI and I was sure they find some type of brain damage because our Jessica had declined so much. The MRI was normal however.
We went to see a Neuro Psychologist to see if the meds or seizures were the cause of the cognitive decline. He, too, saw a huge decline in her cognition but he thought it was due to the fact that the seizures were not under control. The doctor ordered a second EEG and that is when they discovered that Jessica had rare and unusual brain activity. Jessica’s neurologist told us that this type of brain activity was only seen in progressive Myoclonic Epilepsy which is much harder to control. She explained that Myoclonic Epilepsy is caused by a genetic disease and that there is no cure. It was at this point that the doctor ordered the test for Lafora Disease.
I still hoped and believed that the doctors just hadn’t found the proper meds or the proper dosage to treat her with. In the meantime, as we waited for results, the doctor did change her medications and I saw a huge improvement. Jessica was almost normal again. At this point, I was hopeful that it was the medication that was making the difference and that, perhaps, we had it under control.
In August of 2011, Jessica’s test for Lafora Disease came back positive. This was the most heartbreaking and devastating news a parent could ever hear. The medication that had seemed to be improving her condition, no longer was working after a month and, very quickly, Jessica’s condition began to to rapidly regress.
I sit and watch my little girl lose more and more of herself each day. Over time, Jessica will lose her memory, her ability to talk, walk and eventually, she will become bed-bound.
Lafora seems to be progressing faster in Jessica than in other children with the disease. It’s been six months since Jessica’s first seizure and I already need to bathe her and dress her and help her with her every day needs. Jessica shakes so much that it is hard for her to eat and she can’t walk more than 20 feet without our assistance or without the aid of a wheelchair. Jessica has a lot of Absence seizures (spacing out) which I now believe, in retrospect, she has had for several years. I attributed the behavior to ’normal’ teenage behavior.
Jessica is no longer able to attend school so she is being home schooled.
This awful disease hugely affects our whole family in so many ways.
Because Lafora is a genetic disease, we had our younger daughters tested because there was a 25% chance of them also having this awful disease. Jessica and our other two girls are unaware of the name and details about Lafora Disease. We want to spare Jessica the added pain and heartbreak of what she is already going through.
I am missing a chunk of my heart and it will never again be whole. Words can’t explain how I feel; I am just empty.
On November 6, 2011 Jessica turned 16. Jessica should be getting her first car for her birthday but, instead, she is getting a wheelchair. Instead of her wanting clothes, makeup and jewelry like other 16 year old girls, she asked for a baby doll on her birthday. This is what Lafora does to our children. Instead of moving our children forward, Lafora moves them backwards. Lafora take the lives of our children little by little until there is nothing left to take but their life.
Jessica’s mom, Sheri