At first, Jason was told pinched nerves were the reason he couldn't lift his left thumb, then his pinkie, which required surgery. There was mention of symptoms resembling ALS, but nothing to substantiate that diagnosis in medical testing. Yes, THAT ALS, otherwise known as amyotrophic lateral sclerosis or Lou Gehrig's disease. THAT progressive neurodegenerative ALS which affects nerve cells in the brain and the spinal cord. THAT ALS which attacks the nerve cells and leads to a loss of muscle control, the inability to speak, eat, move and eventually breathe.
There is no known cure for ALS. After diagnosis, the average life expectancy is about two to five years, with the possibility that two approved drugs may extend life up to three additional months for some people. As Jason's symptoms presented more and more as an ALS diagnosis, he was further tested and it was determined that he had a rare and aggressive form of the disease. Despite this heartbreaking diagnosis (most people with this form live an average of 18 months), Jason's doctor told him about a clinical trial being performed at Washington University in St. Louis that "actually might work."
This trial is specifically designed to target this rare form of ALS. Researchers have developed a gene therapy drug whereby synthetic genes are injected into a patient's spinal fluid, which then block the messages that are being sent to kill the motor neurons/nerves. If successful, this therapy could possibly halt and even reverse current deterioration and symptoms of ALS. As God's timing is always perfect, screening for a new trial of the therapy was about to begin, and Jason was told on his first visit to the University that "his timing was remarkable." If Jason's diagnosis had been a few months earlier, the timing of the trial would have not matched up. There is a real possibility that Jason may be the first person in the world to start this trial!
Patients will initially receive a high dosage of the drug, with a 1-in-3 chance that a patient (possibly Jason) receives a placebo (which would not include the drug). In other words, a patient who receives a placebo, which is designed to have no effect, will be part of a separate control group in the trial.
As one would expect, Jason and Melinda are facing this disease like warriors. Jason remains in good spirits, despite his left shoulder, arm and hand worsening to the point where he has trouble doing many things with his left side. His right hand and arm have not yet progressed to that point. One leg has a bit of cramping, and appears to be the next area that will be affected. To date, his lungs are still very strong, which has been the most concerning part of the diagnosis.
I have asked myself and others what we can do to show God's compassion and love to Jason and his family. Your prayers are first and foremost. A tangible way to be God's hands and feet to Jason and Melinda is to raise some funds so that they can have a remarkable experience as a family in the midst of this most difficult season of life. Maybe it's taking a trip with their kids and creating a memory that their kids will carry for a lifetime. Maybe the funds will be used to relieve financial stress Jason and Melinda may be experiencing. Whatever they decide to do with the money, I want them to know that a lot of people "have their backs" in the midst of this struggle.
For those of you who are local, we are having a fundraising event for the Knott family on Thursday, April 11, 2019 from 5 to 8 p.m. at the Boiler Brewing Company, 129 N 10th Street #8, in Lincoln (underneath the Blue Orchid). The owner has generously pledged 15% of sales to go to Jason and Melinda. I will be accepting donations that night as well, and obviously through this GoFundMe site. I hope you can attend! Help spread the word!
DonationsSee top donations
- marilyn mcclintock
- John Kaufman
- Joe Kaufman
- Simon Medel
- Connie Flood
Organizer and beneficiary
#1 fundraising platform
More people start fundraisers on GoFundMe than on any other platform. Learn more
In the rare case something isn’t right, we will work with you to determine if misuse occurred. Learn more
Expert advice, 24/7
Contact us with your questions and we’ll answer, day or night. Learn more