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ANDY'S STORY   

On Friday, June 27, 2008, Andy had his first seizure. His second came in the ambulance, his third and fourth in the ER. He had so many over the next 36 hours that we lost count. He was 19 months old.

The first few days in the hospital remain a blur of doctors, nurses, and tests. The best hypothesis: a virus had snuck into his brain.

Despite mega doses of multiple anti-epileptic drugs, Andy was seizing more than three times an hour. As a last resort, he was put into a therapeutic coma. Afterwards, Andy could barely hold up his head, and could no longer talk or make eye contact. But the seizures had stopped. We thought the worst was over.

The hospital stay lasted eight weeks. Over the next few months, Andy made incredible progress. He started to crawl, then walk. He slowly regained words. He began to seem more like himself.

And then the seizures returned, and the progress stopped. Seizures struck daily and knocked him unconscious and un-breathing. We did more tests. We got second, third, and fourth opinions. We added medications, and struggled with the additional side effects. We tried a modified ketogenic diet. Then neurosurgery. More medications, new medications, new combinations of medications.  A number of alternative medicine approaches.  So far, nothing has worked.

The seizures persist. They are far too frequent and intense. His sleep remains poor; his developmental progress is extraordinarily slow; his behavior is becoming more and more of a challenge. Though he grows physically (and oh how he grows :-), he remains developmentally a toddler.

Despite it all, Andy is adorable and charming; sweet and loving, and brave beyond words. He delights in playing with puzzles, bubbles, and anything involving balls. He is constantly in motion. He loves his brother and is fiercely loyal and loving to family and a few special friends. He bears the seizures, the doctors visits, the meds, the blood tests, the therapies - all with incredible spirit.

Every day we wish for something, anything that will make the seizures stop. For Andy, and for so many like him, we need to find a cure for epilepsy.

2019 Annual Update

How is it possible that Andy turned 13 a few weeks ago? Happy birthday, sweet Andy!

We spent Andy's birthday as part of a short inpatient stay at Children's Hospital this year, the irony of which was lost on no one. The seizures have been particularly intense and challenging of late. It has been a rough year for our sweet, resilient little guy (though I think I may need to stop saying "little" as he rounded the corner on 5 ft 7 inches this year, and is just shy of 115 pounds!)

I typically share some stories from Andy's year. This year, instead, I'll share two articles that give a bit of insight into our world.

The first is an article recently published about some new research, which features Andy's epileptologist Ann Poduri and her team's work on some promising new avenues of treatment for epilepsy: https://www.sciencemag.org/news/2019/12/epilepsy-drugs-fail-nearly-one-third-patients-scientists-seek-root-causes-seizures

The second is a short essay written by someone I do not know, and while the details are different than Andy's story, the essence of their experience is so similar and so well articulated that I wanted to share: On Parenting: Holding It Together

This year, as in years past, we will be giving to CURE (Citizen's United for Research in Epilepsy), one of the funders of Dr. Poduri's research. We hope that you will consider doing the same, at http://cureep.convio.net/goto/Andy

All our best for a happy and healthy holiday season,
Steph, Gregg, Matthew and Andy