This post features guest blogger, Karlita Blackwell. She is the parent of a medically complex son, a rare disease/newborn screening advocate, and most recently, June Jessee Memorial Foundation’s new Community Engagement Associate! Karlita shared her family’s impactful story during a recent June Jessee Memorial Foundation event, and we are sharing her message here to reach more families in our community. To find out more about JJMF’s services and how we can support your family, please visit our website at www.junejessee.org. 

My name is Karlita Blackwell, and my husband Ryan and I are parents to a gregarious and fun loving six year old boy named Ezra. He was born a healthy baby and we enjoyed the first couple of sleepless weeks as a new family of three. About two weeks later, we received a life-changing call with devastating and overwhelming news. Ezra’s newborn screening results had come back showing that he likely had a rare genetic condition called Krabbe Leukodystrophy—that without treatment is often fatal by the age of two. In our state of devastation and shock, we did as much research as we could and were put in touch with one of two specialists in the US who handle this rare condition. We learned that because Ezra was asymptomatic, he was eligible for treatment in the form of a stem cell transplant. But time was extremely critical as every second counts with the progression of this disease. Within less than 48 hours after his diagnosis, our family was on our way to Duke University Hospital in North Carolina so that he could receive his transplant under the care of the specialist. We spent the next six months there while he received treatment and follow up care before we were able to return home.

Arriving back in Missouri, our lives looked very different than they did when we had left. Our 6 month old baby boy now required an average of 6-8 doctor or therapy visits a week, not to mention the constant care required at home. He required tube feedings every 3-4 hours, medications 3 times per day, muscle stretching, and not to mention the hours spent on the phone with insurance trying to get approvals for medications, equipment or visits with specialists. A good portion of our days were spent driving in the car to and from appointments or sitting in office waiting rooms. When the dust somewhat began to settle, I quickly realized how much I was craving some sort of support from people who understood what our family was going through. I was told about the June Jessee Memorial Foundation, and the first thing we got involved in was virtual music therapy sessions. It was a wonderful opportunity for Ezra to do something he loves, and at the same time I was able to connect with other families who understand the complexities of our daily life. In addition to virtual music therapy, I learned of in-person events hosted by the JJMF geared towards families like ours –  things like parents night out and a special Halloween party at The Magic House. 

As a parent caregiver, I have been grateful to receive support from JJMF as well. Despite the unconditional love for our children, the mental and physical toll that caretaking can have is taxing. You’re not only a parent, but a nurse, a physical therapist, speech therapist, occupational therapist and your child’s biggest advocate. That doesn’t leave much time to prioritize your own well-being. I have received care packages that always arrive exactly when I need them, giving me a brief reprieve from my caregiver role. 

Today Ezra is a gregarious and comical kindergartener. He is extremely social, loves anything involving the water and would eat cheeseburgers for every meal if we let him. He still has more daily needs than the average child—such as using a wheelchair, receiving several supplemental g-tube feedings throughout the day, utilizing an electronic communication device and attending 3-4 outpatient therapies per week. Despite his evident need, there are still a host of things that insurance doesn’t cover. Most recently, our family received grant money from the JJMF so that Ezra could continue his aquatic therapy lessons, which our insurance does not cover. Not only does he love the water, but it is one of the most beneficial therapies for his low muscle tone. It may seem small, but the relief that this brought our family knowing that he could continue something that we knew was working, was invaluable. 

As Ezra continues to get older, his needs seem to grow with him. He has been outgrowing the equipment to stretch his muscles at a rapid rate, he will continue to need therapies throughout the duration of his life, and we hope to get him a power wheelchair within the next year, which also means a wheelchair accessible vehicle. For our family, these are basic needs for him to be as independent as possible, but as many families like ours know, insurance does not see it that way and these things are often denied and come with a hefty price tag. 

We are so grateful to the June Jessee Memorial Foundation for stepping in and for continuing to be a resource to our family, as well as for the other 3,000 children in the St. Louis area who are courageously facing medically complex neurological conditions like Ezra.