Local family bikes, runs, walks and uses their voices to bring awareness to epilepsy

This story begins with a young man, Brendan, who was the type of human being that this world needs more of.  A tender-hearted kid who also loved a good practical joke, Brendan had just begun his mechanical engineer journey at Iowa State University in the fall of 2017. His mom, Jen Sime, remembers how his many friends talked about him, saying how they never saw him mad or angry, that he was one of the nicest guys they had met, and was always looking out for others.  Brendan worked hard, liked to get his hands dirty, made calculus seem easy, and was a quiet but fierce leader.  The list could go on and on. However, there was one thing that many did not know about Brendan. Sime explains, "He had a disability that many did not see or know about. He was a boy who had epilepsy, but even more so, a boy who lived a great life despite it. Tragically, we lost Brendan on November 28, 2017 when he died following a seizure in his sleep. He was just 19 years old."

In the nearly three years since Brendan's unexpected death, Sime and her family have chosen to spread hope, light, and education in the face of their tragedy.  To accomplish this goal, Sime, along with her youngest daughter Ivy, recently completed a COVID-approved two day 26.2 mile marathon run/bike to raise funds for the Danny Did Foundation. The Danny Did Foundation was founded by Chicagoans Mike and Mariann Stanton in January 2010 after the death of their four-year-old son Danny. The organization works toward its mission to prevent deaths caused by seizures. More information can be found here.

Sime first became aware of the Danny Did Foundation through her involvement with the Epilepsy Foundation of Iowa (EFIA), where she volunteered for the Walks to End Epilepsy. It was during one of the walks that the Executive Director of the EFIA introduced Sime to the Danny Did Foundation.  Sime then looked at their Facebook page and noticed that the organization had spots available to join Team Danny Did in running the 2019 Chicago Marathon. She says, "It caught my attention, but I quickly remembered how hard my last marathon was 14 years ago in NYC, after which I told myself I would not run another. The deadline to register came and went and I did not sign up. The very next day Danny Did extended the deadline, and that was just the shoulder tap I needed."

Sime continues, "I asked my husband if he would help support me if I trained to run a marathon. He gave me a confused look. I then shared with him that I would be joining a team and running in memory of Brendan while raising money and awareness for epilepsy and SUDEP (Sudden Unexpected Death in Epilepsy).  He was quick to say 'yes' and within minutes he found a training schedule that we both felt was a great mix of running, cross training and rest/recovery time that I needed."

It wasn't long after completing the registration that Sime received an e-mail from DDF Executive Director Tom Stanton.  A call was set up.  Sime vividly remembers the conversation.  She says, "He wanted find out more about why I wanted to join Team Danny Did. Knowing Tom had experienced the loss of his nephew Danny in the same way we lost Brendan, I knew his heart would be listening. So I shared with him that 18 months prior, I had lost my son Brendan in his sleep following a seizure. Our conversation from there on was one of the most caring conversations I have had about the circumstances of Brendan's death.  I knew from that point, the Danny Did Foundation was one I wanted and needed to be a part of."

Working with DDF allows Sime and her family to be a part of a team with a mission to help educate and empower people with resources and information.  These kinds of walks and fundraising that bring awareness are critical.  Sime says, "It was not until after Brendan's death that we knew anything about SUDEP, nor did we know that Brendan was at higher risk for this due to the type of seizures he had and when he had them."   She also values the impact that her participation has had on Ivy, who was only 4 ½ when Brendan passed away.  Sime reflects, "As Ivy grows up, we want her to be able to understand what happened to her brother and in doing so how she can be a light and help others. Partnering with DDF for their support and advocacy is an important part of that for us."

Ivy, now 7 ½, is already making her own impact as well.  She raised $1,800 in a previous walk in Iowa City, is a member of the Epilepsy Foundation Kids Crew, and participates in many events through EFIA. When Sime asked if she'd want to participate by biking the marathon while she ran, Ivy didn't hesitate with her 'yes.' Her fundraising goal for this event was $700, which covers the cost of a seizure detection device with service. These devices, usually not covered by insurance, provide a way to alert a caregiver if a person is having a seizure, so that first aid or emergency assistance can be provided if needed.  Ivy ambitiously rode the 26.2 miles next to Sime. At the end of the fundraiser, she was not only able to provide funds for one device, but for three.

Sime is grateful for being a part of DDF, saying, "To have organizations like DDF which bring people together from all across the country with shared experiences that help support and remind you that you are not alone is so very special.  I know for as long as my heart beats and my feet move, there will always be hope that I can bring because of the life Brendan lived."

One of the most important things about epilepsy is to be educated and prepared.  Sime is establishing her own platform for spreading information and awareness by becoming the first SUDEP Ambassador for Iowa. "I have met many brave and courageous families, over the last 2 1/2 years.  Parents, families and individuals who are living with the struggles of epilepsy everyday. Trying to provide for themselves or their loved ones so they can control the seizures and live their best life.  It is because of them, because of Brendan, that I do this work," says Sime.

Friday, October 23rd is SUDEP day, with National Epilepsy Awareness month following in November. Sime says, "1 in 10 people will have a seizure in their lifetime, and 1 in 26 will develop epilepsy.  The chances are high that you know someone who is affected or will be affected by a seizure or epilepsy. Would you know how to help them and keep them safe during a seizure?"  Sime has an easy way to help you answer a resounding 'yes' to that question.  She and her family have a goal to get as many people as they can certified in seizure first aid.  If you'd like to sign up for the free seizure first aid certification class, you can register here. Sime says, "The impact with the knowledge you gain could save a life."