My Walk Story: Heidi’s Backup Band

By Ella Allen

Heidi’s Diagnosis

We are a large family. I have a brother, Finn, who is 11-years-old, a sister, Lily, who is 16-years-old, and another sister, Heidi, who is nine-years-old. Heidi had her first seizure when she was four-months-old. I was eight-years-old. At that time, I don’t think I had even heard the word “seizure.” 

We didn’t realize it yet, but it wasn’t a one-time episode for Heidi. Heidi was born with cortical dysplasia and agenesis of the corpus callosum, a brain malformation that causes her to have epilepsy and cognitive delays. Our family was about to embark on a ‘new normal’ path. 

A New Normal

By the time Heidi was three-years-old, her seizures had increased to twenty per day. That first hospital stay turned into several over the next three years. Those included a 300-mile ambulance ride to see an epilepsy specialist, lots of therapy, and a stay in an Epilepsy Monitoring Unit (EMU). 

Scans in the EMU revealed Heidi’s brain was actually having seizures every six minutes, although visually we were only seeing about one every hour. Heidi’s neurologist predicted she would need brain surgery. In the meantime, Heidi was prescribed various medications to try and stop her seizures.

Heidi Now

Eventually, and miraculously, the seizures did stop. Heidi is now a seizure-free, precocious nine-year-old. She is very outgoing and loves to sing and dance and play with our two Goldendoodles. 

Despite her cognitive disabilities, Heidi is extremely funny and sweet. She goes about her days living in the moment, with no worries about yesterday or tomorrow. She speaks without caring what people may think, which has led to some particularly embarrassing moments in store checkout lines. I think Heidi has ensured that absolutely nothing can embarrass me anymore.

Finding the Epilepsy Foundation

When Heidi was two-years-old, we saw a banner across the road in Shavano Park announcing the upcoming Epilepsy Foundation Central & South Texas Walk. We knew we wanted to be involved with this fundraiser, which seemed like it was designed just for us.

We were hoping to connect with other families who were affected by epilepsy. Also, we realized we were very fortunate to have insurance and resources to provide the medications, diagnostic testing, and appointments with specialists that Heidi needed. Many others are not as fortunate. 

My family met CEO Sindi Rosales and her staff from the Epilepsy Foundation and were so impressed with their compassion and determination to provide care for patients and their families living with epilepsy. We formed a team for the Walk and called it Heidi’s Backup Band, a homage to my family’s love of music.

Almost instantly we were surrounded by loving and generous friends, family, co-workers, and classmates who were inspired to join our team. They participated in the Walk and made donations to EFCST in Heidi’s honor.

Heidi’s Backup Band

That first year, 2011, Heidi’s Backup Band won the honor of the largest team, with about 86 members. We’ve now had the team for eight years, and each year Heidi’s Backup Band has won the honor of either the largest team or the most funds raised. 

Our friends look forward to the Walk each November. We follow up the Walk with a brunch at our house for the team. Involvement with the Walk also led my mom to being on the Walk Planning Committee as well as serving as a member of the Epilepsy Foundation Board of Directors, where she is able to see firsthand the amazing dedication of the staff and all they do for those with epilepsy, including providing clinics, diagnostic testing, medications, and mental health counseling. 

Volunteering and Making a Difference

I got the chance last summer to be a counselor at Camp Brainstorm in Rockport, TX.  Camp Brainstorm is organized and operated by the Epilepsy Foundation, and is free for children with epilepsy, allowing them the camp experience of all kinds of sports, teamwork and fun, all while being supported by counselors and medical staff experienced with epilepsy.

I was a counselor in a cabin of eight- and nine-year-old girls, and I had a blast. Seeing the faces of campers light up when they participate in activities like sailing or crafts was so rewarding. I would see their big smiles and know that they’re doing exactly what they are meant to do – just being regular kids. Camp Brainstorm is made possible because of caring community funders, teams, and individuals who raise funds at the Walk to END Epilepsy.

That is why my family, my friends, and I continue to raise money every year. The Epilepsy Foundation is able to provide these essential services because of your and my donations. Their programs ensure that kids like my sister Heidi receive the special medical care they need but also have opportunities to be regular kids. I think that’s worth walking for.

In spring 2019, Ella Allen was an intern in the San Antonio office of the Epilepsy Foundation Central & South Texas. She helped with all kinds of marketing and development tasks.