Ella’s brave journey with Epilepsy

Hi Everyone! Our names are Sarah L and Cassie S. We have been best friends with Jenna and Mike, Ella's parents, for over a decade. In November of 2021 Ella was diagnosed with an extremely rare form of infant epilepsy called infantile spasms or also known as West Syndrome. Although insurance has helped alleviate some of the financial burden, over the last couple years their family has incurred thousands of dollars in medical expenses and bills due to on-going tests, treatment, therapy and medications. Their family is in need of some extra love and financial support to help navigate through Ella's on-going battle with epilepsy. Their family is one of the most loving, selfless, kind, generous and incredible families we've ever had the priviledge to call our best friends.

Ella's Story:

In November of 2021 when Ella was around 8 months old, Jenna & Mike noticed Ella was making some unusal movements which prompted them to seek medical care. They were sent to the ER to have an emergency EEG. Shortly after they were told to pack their bags and were sent to the Children's Hospital in Minnesota to work with the pediatric neurology team to find a diagnosis for Ella which consisted of an MRI, numerous additional tests and spending a handful of sleepless nights at the hospital waiting for results, which is a parent's worst nightmare. After what felt like a lifetime of waiting, Ella was diagnosed with infantile spasms which is charaterized by the hallmark "spasm" and chaotic brain waves (hypsarythmia) that cause damage to the developing child's brain. Due to the damage caused, developmental delays are likely.

Ella's treatment plan was INTENSE to say the least. It consisted of high dose steriods and medications specifically focused to treat infantile spasms. The medications prescribed, that would ultimately save Ella's life, cost $200,000 per vial prior to insurance coverage. This aggressive treatment plan required precious 8 month old Ella to recieve daily injections at home from Jenna and Mike. The side effects Ella experienced were horrible and included irritability, inconsolable crying, insonmia and intense weight gain. This treatment plan controlled Ella's spasms and chaotic brain waves for a period of time. As a result Ella has some developmental delays but continues to make positive progress through the support of therapy.

Fast forward to 2023 -->

Many children with West Syndrome eventually develop other types of epilespy as they develop and grow. Unfortunately, Ella is one of those children and has now developed myoclonic epilespy and has some other unknown seizure types at this time. They were able to achieve seizure control on medications but abruptly lost control of Ella's seizures a month later. Ella continues to receive excellent care from her neurologist in Minneapolis, MN. Ella's parents and her doctors continue to trial different medications for Ella to re-gain control of her seizures. However, Ella has been accepted at the Mayo Clinic in Rochester, MN. They are hopeful with the acceptance into the Mayo Clinic they will be able to provide a more in-depth picture into Ella's epliepsy. While at the Mayo Clinic, they will also explore options to see whether or not Ella meets criteria to be a surgical candidate.

This journey has collectively taken a financial toll on their family. We are hoping that with support from family and friends that we can raise enough money to cover their trip to the Mayo Clinic. Anything above our goal will be applied directly to Ella's on-going medical care and the costs incurred.

Please consider helping sweet Ella and her family if you are able. There are simply no words that can describe our gratitude. We can offer a small token of appreciation by saying THANK YOU from the bottom of our hearts.

Ella, You are a WARRIOR and inspiration. You have endured and overcome so many difficult obstacles in your very young life all while smiling and keeping your parents and older sister (Ava) on their toes with your spunky outgoing personality. YOU GOT THIS GIRL!!!

We love you Ella, Jenna, Mike & Ava.