Eloise’s Story: Strength, Hope, and Community in the Face of Epilepsy

Hello! My name is Kimberly Kin, and I’m a proud Farmington resident. I’m so grateful for the chance to be here today to share a little bit about my daughter, Eloise, and to share an exciting fundraiser we have coming up to support a cause close to our hearts.

A Mother’s Story

They said it was bruising from coming out of the birth canal. We didn’t think anything of it — you were beautiful, and you were here! However, about 24 hours after you were born, a doctor came into our hospital room to tell us it was not bruising — it was a port wine stain. A what? Okay… what does that mean? Well… there were a lot of coulds in that conversation.

First, this type of birthmark would not fade like some others. She could have Sturge-Weber Syndrome, which could be associated with epilepsy and several developmental delays. But there was no way to “test” for it until something happened (like a seizure) or it was detected on an MRI at the age of one.

Our heads were spinning when those doctors left the room. I immediately went into “okay, let’s fix it” mode and made the five specialists’ appointments they recommended: neurology, dermatology, genetics, and ophthalmology.

The next five months were full of appointments, more what-ifs, and grief — grief of finding it hard to enjoy the newborn phase because I was too worried about all the things, grief that she wouldn’t lead a “normal” life, grief about what the kids would say about her birthmark. Let’s get real — the world can be a tough place sometimes.

Then it happened. At five months, I was getting her dressed in the morning, and something was “off.” I couldn’t put my finger on it but knew something was wrong. I called for my mom, who just happened to be at our house. We called 911 and Danny.

We spent the next 10 days in the hospital. Those 10 days, I hope, were some of the hardest of our lives. The amount of medicine that was given to her to find the right “concoction” to stop her seizures was unbelievable, especially for her little body. It took about three days for the correct medicine to stop her seizures.

It was then that she was officially diagnosed with Sturge-Weber Syndrome and epilepsy. Epilepsy comes in many forms; for Eloise, she has focal seizures, not full-body convulsive seizures (which is typically what most people think of when they hear “seizures”). Her body goes limp, her head turns to the left, and then her eyes follow and get “stuck.” She has small twitches.

We were released from the hospital on Christmas Eve — the best gift we could ask for. We were able to spend Christmas together as a family with our 7-year-old daughter, Liliana.

Eloise now takes anti-seizure medicine daily to prevent seizures. Unfortunately, she has had three breakthrough seizures while on this medicine, landing us in the hospital. However, now we are much more educated and aware compared to her first episodes, making it a little less scary every time.

In addition to her neurology team, she is also followed by ophthalmology (to keep an eye on her eye pressure) and dermatology (to treat her birthmark and keep it healthy), and she receives speech and physical therapy.

Through it all, Eloise has shown us what true strength looks like. She faces challenges with resilience and a spirit that shines brighter than any diagnosis. Her story is a reminder that we should always meet people right where they are, even if they look or act differently than we expect — because behind every difference is a person with a story, a fight, and a strength uniquely their own. Just like our sweet Eloise.

What We’ve Learned About Epilepsy

Seizures Look Different from One Person to Another

What happens during a seizure may look different depending on who is experiencing it. However, seizures are usually stereotypic, which means the same actions or behaviors tend to occur in a person each time they have a seizure.

Quick Facts

• 1 in 26 people will develop epilepsy during their lifetime.
• It can occur on its own or alongside other health conditions of the brain.
• At least 1 million people in the United States have uncontrolled epilepsy — highlighting the urgent need for more research, better treatments, and care.

👉 Learn more about epilepsy here

Fundraiser in Honor of Eloise

Throughout this experience, the Epilepsy Foundation of Michigan has been a great resource to us. They welcomed us with open arms during their open house, treating us like family. They have answered numerous questions and have been a support through their weekly caregiver calls.

Because of this, we decided to give back and organize a fundraiser in honor of Eloise, where all proceeds will go to the Epilepsy Foundation of Michigan. The fundraiser will be in the form of a Scavenger Hunt, with the details below:

🗓️ Event Details

• Date: Saturday, November 8th
• Time: 4:00 PM – 7:00 PM
  • 4–5 PM: Pre-celebrations at TRV/FIT
  • 5–6 PM: Scavenger Hunt throughout Downtown Farmington
  • 6–7 PM: Post-celebrations at TRV/FIT
• Starting Location: TRV/FIT Fitness, 33019 Grand River Ave, Farmington
• Team Size: Up to 6 people
• Family Friendly: Yes! All ages welcome.
• Register HERE
• Can’t make the fun but still want to give? Contact Kim at kimberlyrkin@gmail.com

Closing Message

Thank you for taking the time to read about Eloise’s journey with Sturge-Weber Syndrome and Epilepsy. Sharing her story isn’t always easy, but it’s through these moments of openness that we find strength, community, and hope.

Every step we take is fueled by the love and support of those who walk alongside us. If you feel moved by Eloise’s story, we invite you to join us in our upcoming fundraiser — whether by participating, donating, or simply spreading the word.

Together, we can raise awareness, support families like ours, and shine a light of hope for children facing medical challenges.

My encouragement to others is to meet people where they are, even if they act or look different from you. ❤️