Relieving medical expenses and providing inspiration
Marlie’s Medical Journey
Marlie, named after her grandmother, was a seemingly typical newborn. It wasn’t until she was around four months old that she became incredibly fussy, often inconsolable.
Her mother Amy, a pediatric nurse, and dad Richard rationalized Marlie’s change in demeanor to the extreme summer heat wave that was occurring, as well as other standard newborn changes. Yet something didn’t seem quite right.
One day, Marlie displayed some “jerky movements” that were out of the ordinary. When the movements happened the next day, her parents took her straight to the Emergency Room where she was diagnosed with infantile spasms.
After her diagnosis, Marlie began a series of treatments and was frequently hospitalized, suffering up to 8 – 10 clusters of seizures a day, with approximately 40 – 75 seizures in a cluster. The medical journey her family found themselves on was scary, with many unknowns, and very different than the life her parents had imagined with their first-born child.
Through genetic testing, it has been determined that the probable cause of Marlie’s infantile spasms is chromosome disorder. While a potential answer, Marlie is the only child that has been found to have this specific chromosomal condition, so there is no clear treatment path at this time.
Now two, Marlie is doing better, experiencing only a few infantile spams a week, less hospitalizations, and even beginning to walk. Her parents and doctors attribute her improvement largely to her ketogenic diet, along with her daily medication, supplements, and treatments, which have included physical, occupational, speech, and now equine therapy.
How the JJMF Helped:
Amy was introduced to the JJMF through friends, who referred Amy and Richard for a JJMF grant. Even as working parents with “good” insurance, Amy and Richard were paying for lots of out-of-pocket medical expenses and, at times, didn’t know how they’d handle everything, both financially and emotionally.
They used the JJMF grant to help pay for an unexpected ICU visit for Marlie. Knowing they had the cushion from the JJMF was a huge relief for the family. After receiving the grant, Amy met Genny Jessee, the JJMF’s co-founder and executive director, and began attending JJMF-sponsored Mom’s Nights.
“Meeting Genny and the other moms who are going through a similar journey as our family has been very therapeutic for me,” says Amy. “These women understand what it’s like, and also have lives that aren’t exactly what they thought they’d be. But they are living their lives, making the best out of the ups and downs of their child’s health journey, and it’s very inspiring to know them.”
“The Mom’s Nights give you a breather, a reason to connect with other moms, and do something for yourself,” added Amy. “Even as a pediatric nurse, there are times I didn’t know how I’d handle everything before us, but having people to talk to and ask questions of that know what you’re going through is extremely helpful.”
In her 18th year of pediatric nursing, Marlie’s health journey has brought new perspectives to Amy’s career. “I have a greater understanding and appreciation for the stressors families go through when their child’s health and lives are in jeopardy,” says Amy. “Our experience has given me a whole new outlook on my job, and I now try to be a bridge for families, helping to provide connections to them.”
A piece of advice Amy has to share with other families who have children recently diagnosed with infantile spasms or other medically complex, neurological conditions is to accept help from your family and friends. “It’s been difficult for us to accept help in any form from others, but we’ve learned people genuinely want to be there for you,” says Amy. “This is a long journey with highs and lows, and allowing people to help is therapeutic for both you and them.”
The many personal connections Amy has found through the JJMF have been the biggest benefit for her. “Meeting Genny and seeing first hand how genuine and passionate she is about helping other families has been amazing,” says Amy. “It’s the only resource like this in the St. Louis area, and I believe June was placed in the Jessee’s lives for many reasons, but certainly to do what they are doing now – making a difference for others.”