Two Inspiring Mothers: Julie Fournier and Karyn Colfer
Interview by Michelle Baker of SuccessCircuit.com
I first heard about Julie Fournier and her daughter Alicia’s fight against epilepsy from Karyn Colfer, whose daughter Hannah also struggles with epilepsy. This interview is primarily with Julie although it will be interjected with comments from Karyn (in italics). As I researched epilepsy to try and find out causes, possible cures and how it affects people’s lives, it dawned on me that there is not a lot of ‘real-life’ information out there. Yes, there are tons of research papers and doctor’s reports but very little information from sufferers themselves or from their families and support groups. This needs to change! The stigma that surrounds sufferers of epilepsy needs to change!
This will obviously be a long interview as there are two interviewees with important stories to tell, please bare with it and read to the end. Their stories need telling, epilepsy needs a voice! Please aid us in giving it one!
I think it was about two years ago after Julie Fournier saw Hannah’s YouTube video “Hannah’s survival Story” she reached out to me through Facebook. We immediately hit it off because our lives were parallel to each other. We were both strong advocates to our daughters and we both had older children who needed us.
Can you tell me what FACES is and how and when you became involved with them?
FACES stands for Finding A Cure for Epilepsy and Seizures. It was founded by Dr. Orrin Devinsky about 12 years ago. We were lucky enough to get Alicia to Orrin back in 2009 after many years at the Children’s Hospital Boston. FACES’ mission is to improve the lives of all families affected by epilepsy while at the same time acquiring brilliant doctors and researchers to help find a cure. FACES is based in NYC where Alicia’s care is and where she had brain surgery both in 2009 and 2011.
How has FACES helped Alicia? Can you explain the depth of her condition?
One part of FACES is a parent’s network. This allows us to reach out to other families going through similar experiences and getting a “human spin” on things like treatments, especially surgery, which was the scariest decision we ever made as parents. Also, while in NYC (we live in Maine) we were given accommodations adjacent to the hospital for FREE since only 1 parent can sleep in the ICU. They also offer events throughout the year geared towards kids with epilepsy such as “Game Day” in NY and summer camps for seizure kids. After 10 years of seizures, 16 medications, a metal device implanted and removed from her chest and 2 rounds of brain surgery…Alicia is now seizure free.
That is great news!! I cannot imagine how difficult it must be to see your child go through all of that.
The surgeries came with a cost however…she is half blind in both eyes.
As you know Hannah is 17 now, we have been living with the Epilepsy for 15.5 years. We have travelled to see Doctors in Boston MA, San Francisco CA, Los Angeles CA, and Pasadena CA or anywhere else we thought there might be answers. Hannah had a Vagel Nerve Stimulator (VNS) implanted when she was five and had a replacement after the original one had used the battery life. Hannah has been on over 18 medications, in which all came with different side affects but not one of them ever stopped the seizures. Both our girls Hannah & Alicia had not responded to medication and both had had the VNS placed. Alicia had her device removed but Hannah still has hers….Alicia was a candidate for Brain Surgery and has under gone several surgeries; Hannah was never a candidate for brain surgery because her focal point (the area of her brain where her seizures originate from) are too deep in the brain.
How have you all managed to stay a close family? So many families find it too hard through times like that.
It sure is!! I am fortunate to have a great support system. My husband is amazing through this and Alicia’s older sister is old enough to “get it”. She’s all of our baby…even at 13!
Julie and I told the girls about each other and became the best of friends through Facebook and phone calls. We often sent packages to each other. This past summer I took Hannah to LA and met Julie and Alicia and the four of us had three days of fun. When we met at the Hotel, it was as if we had known each other our whole lives. It was a connection only the two of us as mothers with these special girls could understand. When I talked about standing next to Hannah in an ICU for hours just waiting for the seizures (cycle) to stop, she not only heard what I was saying; she got it.
Do glasses help Alicia or is the blindness too severe?
She wears glasses for a non related issue and is entering a study in Boston next month for potential help but the cut is irreparable. She must be one strong little girl!!!
Alicia is also blessed in that she has the voice of an angel. Her singing and finding musical theater has been her saving grace through all of this. That is why we host a musical benefit. Her strength is beyond inspirational!!!
Explain to me how important the fundraising is for Alicia and other children like her.
It is her self-described “favorite day of any year”! Alicia’s heart is as big as my house and for her to feel like she is “giving back” is indescribable. It is also great for other kids with various issues to see her get on a stage and shine even though she’s had so many hardships. She wants to prove that anyone can have their dream no matter what!
When Julie told me about FACES I jumped on board. I was honored that she asked me to speak at the benefit. We may live on opposite sides of the US but we care greatly about educating the public, and building a bridge between the medical, educational and socialization of what it has been like for our daughters and other children.
I am actually in awe of both of these families!
Tell me about the fundraiser and what happens there? Is it only Alicia that performs or do you have other people singing or acting? I also noticed that you have some great raffle prizes.
We have 12-14 performers of various ages, all of whom have a connection to Alicia via the theater. They’re amazing! It is a “Best of Broadway” style cabaret and the ticket price includes the show, automatic entry to the raffle and a champagne/snacks reception. I like having “one-of a kind” raffle prizes! They are great this year!
Julie and I often joke she has both of my kids rolled up in one, Alicia suffers greatly with epilepsy, but she can belt out Broadway Tunes like Christopher. And because Alicia is a big fan of Christopher it gave her and Hannah something else besides Epilepsy to bond over.
They are indeed great prizes. I hope people realise this and donate as much as they can. So many people love Broadway, I am sure you will have a sold-out performance!
How many people are you able to have for the fundraiser?
We can seat 175.
What are Alicia’s dreams for her future? And what are your dreams for her?
Alicia’s one dream is to be a star! Broadway is her favorite. She got to sing at Radio City Music Hall this spring in the “Garden of Dreams” show representing NYUMC and blew the doors off! My dreams for her are to be healthy, happy and to never lose her beautiful spirit.