Road to No More Seizures

Many of you know Abagail’s difficult story as it relates to hydrocephalus. Luckily, and fingers and toes crossed, her last brain surgery to treat this condition with no cure was over 2.5 years ago. 

In case we didnt think she was as tough and inspiring as they come, in November 2017, she had her first seizure. Epilepsy was diagnosed a month later.  She went from clusters of seizures every two weeks, to now daily, and more often than not, multiple daily partial complex seizures.

After four anticonvulsants failed to reduce her seizures, we made the difficult decision to undergo  epilepsy brain surgery.  On November 9, 2018, Abagail’s left hippocampus was removed via thermal ablation.  I’m devastated to say that it made no difference and the fifth anticonvulsant we are now trying  is not showing any sign of seizure cessation either.

However, our neurologist continues to believe she could be worse without the medications. But the side effects of the medications are so awful, I’m no longer sure which is worse- the seizures or the anticonvulsants.  She’s dizzy, sleepy, gets overly heated easily, has an insatiable appetite or won’t eat at all, her concentration is compromised and she’s at risk for developing kidney stones. Did you know there are no studies of the cognitive impact of long-term use of anticonvulsants on children??  But with side effects so awful, how could long-term use be good??

We have had a second opinion at Boston Children’s and the path offered is the same- more trials with anticonvulsants. Possibly another attempt at epilepsy brain surgery. 

We have decided to try another route before taking her outside the US medical system. And while it is the way medicine is trending, it’s not mainstream enough yet for insurance to cover.

Many of you have heard of 23AndMe. That’s the entry level version of what I’m talking about. We want to learn Abagail’s full genomic sequencing for known pathological variants that cause epilepsy, as well as pathogenic genes that can cause epilepsy.  The company pioneering this will also look at a lot of contributing factors such as methylation and detox and vitamin and inflammatory pathways etc that have been helpful with seizure children.  

For all the testing and the follow up and visits for the one year commitment is close to $5000. 

We want to do this. We are hopeful his could lead to a road without seizures for Abagail. We are hoping you may be in a position to help us make this happen for her. 

Thank you for any amount you can contribute and for sending this to others who might be open to contributing, as well. 

With sincerest of thanks,

Abagail’s family
  • Matthew Jordan 
    • $100 
    • 28 mos
  • Giovanni Snidle 
    • $200 
    • 30 mos
  • Anonymous 
    • $30 
    • 30 mos
  • Anonymous 
    • $50 
    • 30 mos
  • Nina Morse 
    • $100 
    • 30 mos
See all

Organizer

Melissa J. KM 
Organizer
Washington D.C., DC
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