In April of 2016, Kevin started to notice some twitching (fasciculation) in his left arm. We didn’t think much of it. I was pregnant with our daughter, Kinley, at the time. After about a month or so of the twitching, I remember us talking about how it wasn’t stopping and maybe he should go see his family doctor. He went in June 2016 and was then referred to a local neurologist. After a series of tests and visits, we were told by our neurologist that he believed that Kevin had ALS.
ALS, or amyotrophic lateral sclerosis (Lou Gehrig's disease), is a progressive neurodegenerative disease that affects nerve cells in the brain and the spinal cord. Motor neurons reach from the brain to the spinal cord and from the spinal cord to the muscles throughout the body. The progressive degeneration of the motor neurons in ALS eventually leads to their end. When the motor neurons die, the ability of the brain to initiate and control muscle movement is lost. With voluntary muscle action progressively affected, people may lose the ability to speak, eat, move and breathe. The motor nerves that are affected when you have ALS are the motor neurons that provide voluntary movements and muscle control.
Kevin’s neurologist immediately checked with four well known medical facilities to determine who could see Kevin quickly. At that time, Vanderbilt was available to see him in October for a second opinion to be sure. By then we were better educated with what that diagnosis entailed. While waiting for our appointment at Vanderbilt, we were also able to get an appointment at Duke with help from a very dear family friend; that appointment was set for two weeks after our initial Vanderbilt appointment.
We anxiously waited two months for our appointment in Nashville, where they too confirmed the diagnosis. Soon after we went to Duke for confirmation, which we received. After a few visits to Duke we received a phone call from Kevin’s neurologist in Chattanooga. The nurse said Emory had contacted her about anyone they might recommend for a stem cell trial. We talked about this and knew this was a BIG deal and wanted to go to Emory to talk to the doctor in person. At this visit, the stem cell trial was never brought up until we asked. The doctor said they weren’t anywhere near being ready for that trial…the funding wasn’t there and he didn’t know if it would be. We were confused as to why we were called, however we decided with having two kids at the time under the age of 5, that Emory was an excellent facility and a lot closer than traveling to North Carolina for Kevin. We still believe there is a reason we were contacted by Emory. Kevin has his first clinic visit at Emory on 7/14/17. We will meet with several people that day (speech, physical, occupational, etc).
It has been extremely difficult to accept this diagnosis. It’s the unknown of being diagnosed with a terminal illness at such a young age that scares us the most. We are 33 years old with two young wonderful children, Reed (6) and Kinley (1). They are both so active and keep us busy during this time. We are so blessed to be their parents. They bring so much light into this world and give us hope. We pray every single day for a cure for this evil disease. In just less than a year, Kevin’s speech has been affected and walking is starting to become more difficult. He is drained physically quite often. When we go to clinic this Friday, we will find out what he needs the most right now to help him to remain more independent. There has been a new drug approved by the FDA in June and we hope that it will be available starting sometime in August. However, the infusion drug is very expensive ($1,000 for each treatment). You start with 14 treatments consecutively and then 10 days off, 10 more treatments and then 10 days off, this cycle continues for the rest of his life. We truly appreciate any and all donations. More than anything we need prayer!! We believe in the power of prayer and know God is ultimately in control. Thank you for reading our story and your prayers!!
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- Joel Stice
- Jere Fraser Leikam
- Sheila Schultz,
- Casey McFarlin
Organizer and beneficiary
Sister Bay, WI