The Value of Support

Conrad, Erin and Madison
Conrad, Erin and Madison

By Erin Hurter
Epilepsy entered my life abruptly.

My daughter, Madison, was 17 when she had, what I later found out, was a grand mal seizure. I had heard loud banging from the bathroom where she was showering. When she did not respond, I found her unconscious and called 911.

There is a stigma that comes with being a teenager when the immediate assumption is that illegal drugs is the cause.  (Reason #1 why education about epilepsy is necessary).

After a week or two in and out of the hospital, I was traumatized with a child who I was afraid to leave alone. I had no knowledge about epilepsy and needed the support and tools to navigate.

I researched epilepsy in Sarasota and found JoshProvides. Bruce Chapnick answered the phone and his reassuring response let me know I was not alone. We met at a local coffee shop and answered my many questions including where my family and I could go for support. That question was what led to the start of the JoshProvides support group.

I had been involved with All Children’s Hospital Guild for almost 20 years and epilepsy was not something I had encountered. I had a great network and found there were no support groups for epilepsy in the surrounding areas.

Bruce and Sandi agreed there was a need. Together we connected with other epilepsy organizations that did have support groups and even made some visits. We discussed what we thought our group would need and a support group was born. Support not only for the person with epilepsy, but for the entire family.

That was 11 years ago. The support group has given me the tools to not live in fear and the desire to advocate and educate about epilepsy.

Today, the JoshProvides support group provides a community connection for individuals, families, and caregivers and features local resources, speakers and an opportunity to share their experiences, ask questions and offer each other emotional comfort. Meetings are held virtually twice a month to combat social isolation and maintain a community connection.

Thankfully, today Madison is doing very well and living her life to the fullest. She is a social media influencer, traveling the world and focusing on beauty, health and wellness. She is the mother to a fur-baby bunny – Bunners.

I believe everything we experience in life is a gift as we search for and find the beauty and the lessons in our experiences. The gift that epilepsy gave me and my family is compassion for those living with epilepsy and a willingness, just as Bruce had done for me, to be there for others and now also to invite them to be a part of our support group.