Thriving with Epilepsy: Ellis Weiss
Being diagnosed with a rare form of epilepsy comes with its own unique challenges, but that doesn’t mean you have to go through it alone. Since their daughter Ellis was diagnosed with Doose Syndrome, Erik and Kendra Weiss have used monthly EFMN Connect Groups to meet others who have a child with epilepsy and learn from their experiences.
Erik and Kendra Weiss were in the middle of starting a family when their daughter Ellis, just a year and a half old at the time, was diagnosed with a rare form of epilepsy. Raising three young kids was going to be a challenge on its own, but they now had a whole new world to learn about and adapt to.
“Ellis was diagnosed with epilepsy while we were pregnant with our third child. It has been difficult, frustrating, and exhausting balancing the activities of our oldest daughter, welcoming a newborn, and making sure we are doing everything we can for Ellis,” says Kendra.
This included meeting with Fargo Regional Coordinator Janice Tweet to find support groups and social events that worked for the entire family. The Weiss’ participated in their first Rise Above Seizures Walk this fall and are regular attendees of the monthly Fargo Connect Groups where they’ve met other parents who have a child with epilepsy.
“One thing we have learned about epilepsy is that it affects everyone differently. Each person we connect with seems to have a different story and it helps to hear how they deal with things and what works for them,” says Erik.
Shortly after Ellis’ diagnosis Erik and Kendra started a group called “Ellis and Friends” to raise money and awareness for epilepsy-related causes. A portion of the money they’ve raised has gone towards renting space and time for Family Connect Groups at TNT Kid’s Fitness, a gym and indoor play area for kids, so parents can connect while their kids enjoy supervised gym activities free of charge.
“Our hope is that we can continue to grow these events and see higher participation numbers and more open gym times throughout the year,” says Erik.
Searching for information online is how Erik and Kendra learned about EFMN, but they’ve found speaking with others to be even more helpful. They’ve especially found it useful to learn about medication side effects. Doose Syndrome, the rare form of epilepsy Ellis was diagnosed with, is considered a drug-resistant type of epilepsy and has caused them to try half a dozen medications as they continue working towards seizure control.
“Between the epilepsy and medication side effects Ellis goes through a range of emotions, most often exhaustion, hunger, restlessness, and insomnia. It can be a vicious cycle at times and every day is new and different,” says Kendra.
During this adjustment to their new normal Erik and Kendra have found that self-education is a must and encourage others to take in as much as possible.
“First and foremost, trust your doctors. With that said, take time to educate yourself and become familiar with the various medications and therapies. Use that knowledge to ask questions and to be an advocate for your child’s care,” says Erik.
Just like other girls her age Ellis likes to play (and fight) with her sisters, enjoys rides on the golf cart with dad, and being on the pontoon during the summer. Despite their busy life, Erik and Kendra have helped make monthly Connect Groups more family-friendly and are part of the reason for EFMN’s involvement in Giving Hearts Day on February 14th.