A Grant for a Good Night’s Sleep: Our Fund’s Very First Family
If you have a toddler who needs round-the-clock care, mounting sleeplessness can make the already difficult task of parenting feel overwhelming. As anyone who’s had a sleepless night knows, the next day is a blur of groggy irritability. Chronic lack of sleep impacts your immune system, memory, and metabolism. Poor sleep has been linked to anxiety and depression, can compromise decision-making, and even lead to accidents. For Erin and Mark Kramer, months and months of staying up all night to care for their daughter, Gwen, was in some ways the hardest part of the job.
The Kramers were the very first family to receive a grant from the June Jessee Memorial Foundation, which my husband and I created, in part, to help the short life of our daughter, June, have meaning, beyond how much she touched our own family. For us, meeting the Kramers, and being able to offer some respite (in the form of a night nurse) helped confirm the importance of stepping in with much-needed support when other resources fail.
Gwen Kramer was born in September, 2014, and as Erin puts it, “She was simply perfect, a darling baby girl with big brown eyes, long eyelashes, and a button nose.” But when she was just a couple weeks old, she began crying and screaming for long periods of time. Thus began months of dragging her to specialist after specialist, appointment after appointment to try to figure out what was going on. The Kramers also gave her different medications, to no avail.
When she was five months old, Gwen was diagnosed with a neurological condition, and then a severe form of epilepsy. She also has a brain disease and a condition called microcephaly that causes a baby’s head to remain small, preventing the brain from growing as it should.
For the first three years of Gwen’s life, one of the many hurdles the Kramer family had to face was handling her daily seizures. Finally, a doctor prescribed a ketogenic diet—a high-fat, low-carbohydrate eating plan that can help treat difficult-to-control epilepsy in children. This dietary change alone reduced Gwen’s seizures from nearly 200 a day to about a dozen a day.
In February 2017, at their regularly scheduled neurology appointment with Dr. Liu Lin Thio at St. Louis Children’s Hosptial, Erin and Mark began to discuss Gwen’s care and overall needs. Dr. Thio asked if there was anything they needed that they didn’t have.
As Erin later put it, this question sparked a litany of deeply-felt complaints. “Insert Erin stepping on soapbox!” They’d been dealing with an ongoing barrage of insurance denials, such as for custom equipment that they absolutely needed. They were both working full-time and paying for top-tier insurance, yet their policy didn’t cover the custom wheelchair Gwen needed, which cost between $5 and $10 thousand dollars, or the custom car seat to support her head and neck, which ran about 10 times the cost of a car seat you’d pick up at Target.
They also needed a night nurse. Most of Gwen’s seizures were occurring overnight. “Gwen’s sleep was almost non-existent some nights, due to the combination of multiple seizures, muscle spasms, sleep apnea, and reflux,” says Erin. “A typical night at our house consisted of alternating positions of caregiver and sleeping parent.” Sometimes they’d swap two-hour shifts throughout the night. Other times, they’d alternate full nights of staying awake. “I can vividly remember going to work on many occasions thinking, I slept two 45 minute shifts last night.”
Insurance did not help. “We had been begging insurance for coverage for night nursing, but it was denied. We had to pay hospital bills, uncovered pieces of medical equipment, monthly medications, and copays for specialists and therapy.” These bills meant no extra funds for a night nurse.
We’d just begun forming our foundation when Dr. Thio told us about Gwen’s condition, and Erin and Mark’s struggles. Gwen was three years old at the time, and loved being outside in the sun, swinging in her backyard, going for walks, and listening to music. But she was also legally blind, as June was, and unable to enjoy the typical childhood milestones, like sitting up, walking on her own, running, talking and eating.
Gwen’s condition was similar, in many ways, to June’s. We could personally relate to the struggles the Kramers were facing in caring for their daughter. The Kramer family became our very first grant recipients. I was so sad about the circumstances for Gwen, and hoped the grant would offer some peace of mind.
They used the $3000 to hire a night nurse for nine days. “You may think some nights of nursing doesn’t sounds like much, but it is a huge gift when you are stressed, exhausted, and running on empty,” says Erin. “Night nursing allowed Mark and me the opportunity to sleep eight hours each night and to recharge our batteries. It gave us a chance to be husband and wife rather than tag-team caregivers, and ultimately a chance to be more clear-minded for Gwen. We did what we had to do to provide the best possible care for our daughter. But you also learn that you cannot be a great caregiver unless you properly care for yourself.”
Later, the Kramers sent us note. In it, they wrote, “Thank you for funneling your grief into strength to help other families.” I’d been thinking about their family so much, even though I hadn’t yet met them. Hearing from our first recipient was healing for me, and helped me feel June’s continued value. I imagined June watching over Gwen, Mark and Erin.
Since that grant, Gwen has continued to lose function. The Kramers have far more understanding of her condition than they did at first, thanks to Dr. Thio and his team, and Gwen’s quality of life has significantly improved.
Since that initial grant, we’ve become real friends with Erin and Mark, which is another surprising benefit of forming our foundation. Erin spoke at our second annual fundraiser, and I think what she said that day about friendship was a lesson for me about the importance of reaching out to those around us.
“A year ago, we were essentially strangers. Today, there is a deep friendship that is grounded by an understanding, empathy, love, and support that people can share when they have experienced a similar journey. Mark and I have been blessed with such supportive family and friends through all of Gwen’s highs and lows, but there is something extra special about the support of another couple that has walked the path before you and been in your shoes.”