On Saturday Feb 26th Chantille Rohuedel dyed her hair purple to kick off her SUDEP (Suden Unexpected Death in Epilepsy) Awareness and Fundraising campaign “2 From 18”.
Exactly one month later on March 26th at 17:40 if Chantille has raised her very specific goal of $17,800 she will end her campaign by shaving her head.
So why the weird amount and weird time to end her campaign? The numbers are significant to Chantille and her family. They represent 2 away from 18, because that’s when she lost her nephew Dom last year to SUDEP.
Dom was 2 months away from his 18th birthday.
Her goal is to raise $1000 for every year her nephew lived with seizures. It is a lofty fundraising goal – but Chantille is confident she can achieve it (if there is one thing people know about her, it is how much she loves her nephew and her hair).
If her goal is reached, she would like to have Dom’s 4-year-old little brother take the first pass at shaving her head.
Follow Chantille’s progress and check out her photos and videos here on her Facebook and Instagram Pages.
Make A Donation to “2 From 18”
From Chantille:
“Dominic , such a special boy. He was the first king of my heart. The day he was born I think my heart grew about ten sizes. Dominic gave me the honor of making me an aunt for the first time. Watching my brilliant, kind brave nephew grow has been one of life’s most precious experiences. Dominic was your typical gamer, high tech, jimmy rig your iPhone to the door peep hole and face time to your tablet because you are grounded from electronics and want to see when dad is at the door kind of kid. Dom was also the kid with epilepsy. Although Dom lived with epilepsy since his first birthday he never let it get him down. As a matter of fact I recall hearing about one of Dom’s seizures and as he was coming out of postictal phase. His eyes weren’t even fully open yet and all you hear him say was“ Let me guess , I had a seizure, well that sucks”. That was Dom, he was the one that just finished having a seizure and he would be cracking jokes to try to make everyone around him not scared. My favorite first nephew Dom is also the kid that passed away last mother’s day from SUDEP.
I decided to do this fundraiser because every time I talk about Dom I now have to refer to him in past tense. A piece of my heart is now missing and no matter what I do it just hurts. I am doing this fundraiser because I am angry, I am angry that SUDEP robbed my nephew of so many milestones. It is not fair that my nephew worked so hard to graduate but instead of wearing his cap and gown to his graduation he had to wear it to his funeral. I am doing this because mommies and daddies shouldn’t have to be afraid that their child with epilepsy won’t wake up. I am doing this because brothers and baby sisters shouldn’t have to get to know their oldest brother through stories and pictures. But the biggest reason for this fundraiser is I have all of this love for Dom and I don’t know what to do with it.
In honor of my beloved nephew I launch my “2 from 18” fundraiser. Dom was 2 months from his 18th birthday which is why I have a goal of 17 800. If I reach my goal I will shave my head. This is very personal to me, 1. because I love my hair and 2 when Dominic was little he always thought my hair was a wig. If he was here I know he would be laughing.
With your donations it brings us closer to one day not having to hear “ We don’t know what is causing your loved ones seizures”. Closer to not having families added to SUDEP statistics. One day closer to not having your son or daughter bullied at school for speaking different or having bruises on their faces from the previous nights seizure. My nephew brought me so much love and happiness that it would be shame for myself to just sit here and do nothing.”
Read Dom’s Story
Dom lost his life to SUDEP on May 9th 2021. Two months from his 18th birthday.
Dom’s family’s hope is that his life and memory can inspire others living with this condition. That it can comfort the scared first time parents who received the news that their child has epilepsy. That it can give that frightened overprotective mom the courage to let their baby learn to swim even though she was told to be careful and not take risks. That it can give a child who is feeling weird the strength to get up each day and find the joy in living.
