SUDEP Action

Making every epilepsy death count
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Ethan was born normal and healthy.

But not long after he had his immunisations aged 2 ½, something changed.

He began having horrible seizures, multiple times throughout his early days.

About 3 ½ years old, he was diagnosed with Landau Kleffner syndrome. He was placed in a wonderful residential treatment facility at the age of 9 and did well for many years.

Ethan loved Disney movies, colouring pencils, crayons, car rides with his Pop Pop Lou and going to Wendy’s with his Grandmom Donna.  He loved Christmas and especially loved Christmas carols. He would listen to them all year round...

Ethan went on to adult services at Devereux (Pennsylvania) until one day he was just found dead in his room.


So shocking, our family had never even heard that term before.

Ethan was a gift of life participant, so after he passed, he was able to help multiple people with his bone and tissue donations.  I received a heart-warming letter from a couple stating how Ethan’s tissue donation was used for their son’s knee replacement, who was an avid football player going on to play on the college level.

Ethan was a tremendous giver both before and after his passing. Our family takes comfort in knowing that one day we will all meet again together in Heaven.

Ethan was born on 8 December 1992 and passed away 30 January 2017.  

He was 24 years old.  

He had two younger siblings, a sister Sophia, who is now 25, and a brother Maxwell, who will be 24 in a few weeks (both pictured).  

We now just want to help spread awareness that SUDEP is something people with epilepsy need to hear about.

Julie, Ethan’s mother

(Picture - Ethan is front centre)


We understand that this My Story (and any of our other My Story articles) can stir up some memories and emotions of your own experiences.

If you need to talk, please do contact our Support team. Its free and confidential.

[email protected] or 01235 772852.