Meet Heather and Kaydance. Two of our incredible community members who want to share their story with you. Heather is a single mom of three children, and her middle child, Kaydance was diagnosed with epilepsy at age 3.5. Kaydance’s epilepsy is complex with multiple seizure types; she uses medications, VNS and Deep Brain Stimulation as treatments to lessen the impacts of seizures, but still her seizures are only reduced, not eliminated. Kaydance is now 17 but continues to need a similar level of support and care that she did when she was first diagnosed with the disease 14 years ago.
Kaydance’s favourite activities involve spending time with her mama, helping plant flowers and vegetables in the garden, dressing up as Elsa to go trick-or-treating with her cousin and spending time laughing with her little brother. She loves chicken nuggets, the colours pink and purple, and her favourite place to visit is where the princesses live! A Disney cruise where she met all her favourites: Ariel, Rapunzel, Elsa, and Anna. Heather shares with us that she has done everything she can to advocate and care for Kaydance, and that “anything that’s good for Kaydance is what I’m going to do”. Even as Heather does all she can, she wants others to know that, “children with epilepsy suffer quite immensely.”
Heather and Kaydance participated in a documentary titled, “Seizing Hope”. More details of their story are shared here: https://www.seizinghopefilm.com/
Despite the many challenges that Heather has faced as a mom and primary caregiver to Kaydance, her face lights up when she shares, “Kaydance brings me joy. No matter how much of a hard day I’ve had, and how much she goes through with her struggles, she has a smile on her face every day.”
With Sick Kids Hospital being a far drive away, Heather and Kaydance connected with Epilepsy Durham Region years ago to find epilepsy support in their local community. Heather participates in our Caregiver Support Group, Clinic to Community program, and accesses educational and advocacy support for Kaydance as she navigates challenges with attending school. Heather recounts,
“I’ve always been able to reach out to Epilepsy Durham Region. I appreciate them more than I can say, to be quite honest. As a parent, you feel like you know your child the most, but you always have questions in the back of your head. Am I doing the right thing? After being involved in Epilepsy Durham Region’s educational workshop last year, I even learned things that I didn’t know after dealing with this for 13 years.”
Without your financial support, we cannot grow our programs and capacity to come alongside more members of our epilepsy community in Durham Region. Heather reflects that without the support she received, she would still be questioning the knowledge and ability of Kaydance’s teachers to care for her at school, and may not even feel comfortable with her attending. Having this confidence has had incredible ripple effects. Now Heather can return to work to support her family. Otherwise, she would need to provide full-time care to her daughter, putting her livelihood in jeopardy.
The stakes are high for our community members, and we need your help to increase our capacity to support more families like Heather and Kaydance who often don’t know where to turn after receiving a life-changing epilepsy diagnosis. We are doing everything we can to serve as many individuals and families as possible, but we need your help.
Kaydance’s story is more than an account of challenges; it’s a testament to the impact of your generosity. Your contributions enable moments of joy in the midst of great challenges, opportunities for growth and connection, increased epilepsy awareness and understanding. These are the building blocks of a hopeful future for Kaydance and others like her. Together, we’re not just supporting individuals with epilepsy; we’re making a way forward for strength, unity, and the promise of brighter tomorrows. Will you help us build a hopeful future for others like Kaydance in 2024?
We need to raise $15,000 before 2023 comes to a close. This will help make it possible for us to provide vital mental health support through Project UPLIFT, expand our epilepsy education and advocacy programs, and increase the number of individuals and families we can dedicate ourselves to serving in the new year. If you haven’t had the chance yet, help us finish the year strong with a special year-end gift.