Thriving with Epilepsy: Jacqui Mattson
Seizures can strike at any moment. Imagine living your everyday life seizure-free, and then one day you are faced with a life-altering diagnosis. Meet the Mattson family. After receiving news that their daughter Jacqui was diagnosed with epilepsy at age 14, they learned to cope with her seizures and find support through EFMN.
Ann Mattson, with her daughter Jacqui
Ann and Jacqui at EFMN's seven-week Art Therapy program.
Photos by Tony Nelson
The Mattson's Story with Epilepsy
Epilepsy has played a role in the Mattson family for the past 13 years. Ann Mattson’s daughter, Jacqui, was born with intellectual and developmental disabilities, and at the onset of puberty, Jacqui experienced her first seizure. The day seemed like any other; Jacqui’s older brother went to get her from daycare, but upon arriving saw an ambulance in front of the house and Jacqui being carried out on a stretcher. Jacqui’s family converged at the St. Paul Hospital where they learned that Jacqui had been moved from the ER to the ICU.
The next few days were a blur. Test after test, the doctors tried to determine a diagnosis. With no family history of seizures, the family was unprepared when Jacqui was diagnosed with epilepsy. They quickly devoted themselves to understanding the ramifications of the diagnosis and Jacqui’s new medications.
Shortly after Jacqui’s episode, Ann Mattson was given a pamphlet on the Epilepsy Foundation of Minnesota (EFMN) to help her find support. As the family struggled with the dramatic changes in their daughter’s demeanor due to anti-seizure medications, Ann reached out in anguish to a Parent Connect group sponsored by EFMN. At these meetings, Ann found support from parents who had experienced the same pains first-hand. Parents urged Ann to work with her daughter’s doctors to find a medication that would not only control her seizures but give back their charming child. After trial and error with three different medications, they found the right mix of medications for Jacqui, and since then, she has been seizure-free.
The Mattson family is still very involved with the programs of EFMN. They participate in annual picnics, social get-togethers, and the Creative Art’s Studio E’s art classes. They give back to EFMN by volunteering at the EFMN booth at the Minnesota State Fair and by donating and shopping at Saver’s thrift stores, which provide funding to EFMN.
Despite the difficult journey that her family has endured, Ann would like to pass on a message of hope: “For any overwhelmed parents of a newly-diagnosed child, I would like to tell you what we were told by other parents. Insist… no, demand that your child’s medication be changed until they find one that is effectively stopping their seizures and does not alter their personality. With proper treatment, most people with epilepsy will be able to secure a driver’s license, marry, have children, and lead normal lives. What more could we ask for them?”
Feel alone? Find support from EFMN:
EFMN offers support groups for adults living with seizures and parents/caregivers of those living with epilepsy. Interact with others, receive support, share resources and find a sense of community amid the challenges of epilepsy. Check out our online calendar to find the Connect Group nearest you.