Providing connections and support for Claire and her family
We were introduced to Claire and her parents, Carrie and Drew through a mutual connection. Claire was around two years old and had been recently diagnosed with infantile spasms and epilepsy.
Claire’s Medical Journey
Early signs of Claire’s medical conditions started around her first birthday. Her parents noticed she wasn’t talking much yet, and began questioning whether she was meeting some of the typical developmental milestones of a one-year-old. She also was suffering from recurrent ear infections, had frequent fevers, and would display “twitching movements” that seemed unusual to her parents.
Over the next year as Claire’s “twitches” became more frequent and her parents had growing concerns about delayed developmental milestones, they began seeking answers on their own and asked to be referred to a neurologist. From her neurology evaluation and the results of her EEG, Claire was diagnosed with infantile spasms and epilepsy at the age of two – an answer to her parents’ suspicions.
In addition to receiving treatment for her chronic infantile spasms and epilepsy, Claire began speech and occupational therapy, as well as other treatments to help address her neurological conditions and developmental delays. Now five years old, Claire has progressed well. Her seizures are small and have a greatly reduced frequency. She can walk unaided and has few limitations. She also continues many of her therapies, including speech therapies, and has progressed to speaking at a two-year-old level.
How the JJMF Helped:
Genny Jessee, the JJMF’s co-founder and executive director, was introduced to Carrie in the early days of Claire’s diagnosis.
“It was overwhelming for me at first. You’re hearing all these new terms you’re unfamiliar with from doctors, going to countless numbers of appointments, and trying to figure everything out to do what’s best for your child,” says Carrie. “I had no idea where to turn, and then Genny started contacting me and was a huge support to our family. She listened, provided me with helpful information, and began inviting me to connect with others.”
Carrie began attending the JJMF’s sponsored Mom’s Nights, and found comfort in meeting and having fun with other moms in similar situations who knew what she was going through. She quickly found friends, connections and emotional support from the group.
“Unless you are going through it, you don’t quite grasp it, and having others who understand has been a big release for me,” says Carrie. “The moms I’ve met through the JJMF get me on a different level than even my close friends and family, and it provides me some relief from being a 24/7 caregiver of a special needs child.”
Carrie also shares advice for parents that have a child newly diagnosed with medically complex, neurological conditions. “The JJMF has been a great example for me of the strength and comfort you can find from others. With these conditions, you have to be a strong advocate for your child. Connecting with other parents to learn about helpful resources and their stories enables you to ensure your child receives the best care possible. I’d highly encourage parents of children with undiagnosed, neurological conditions in the St. Louis area to get connected with the JJMF.”