08/30/2022
Our son, Jacob, was diagnosed with ALS... this is our journey so far:
Jacob Harper, now 23, began showing signs of his diagnosis in November 2021. Initially, it was just a limp. We assumed the issue was related to a new pair of work boots. We replaced the boots, but the limp continued until, in January of 2022, Jacob had his first fall at church stepping off of the drum riser. The first time he stumbled was of no concern, but when it happened a second time, it was an indication of something being wrong.
Dr Clark Adkins, a physician at WV Ortho-Neuro examined Jacob and performed an MRI, which showed no issues. It was assumed Jacob had somehow damaged a nerve and that the nerve would likely heal before we were able to see a neurologist, this referral was made to cover all bases. Initially, it was assumed that getting into a neurologist would take up to six months.
Jacob was able to get into Marshall Neurology within 2 weeks. Dr. Jared Hollinger examined him and performed an EMG, nerve conduction study, and genetic blood test (from the Mayo Clinic).
On March 16, within three weeks of initially seeing Dr. Hollinger, we were given Jacob‘s diagnosis as ALS resulting from the FUS gene and a life expectancy of 1-3 years. At this time Jacob was walking with the assistance of a cane.
Our second opinion came a week later from Dr. Robert Neel at the University of Cincinnati. He was able to confirm Jacob‘s diagnosis within an hour of examination. It was Dr. Neel who suggested a clinical trial at the Ohio State University.
Dr. Stephen Kolb of the Ohio State University reached out to us the next day and scheduled a call with us on Friday March 25th (2 days after our Second opinion at the University of Cincinnati).
Dr. Kolb was extremely excited to speak with us and could not wait to get Jacob into the ION363/Jacifusen clinical trial. He explained the science behind treating a genetic form of ALS and further explained similar diseases such as spinal muscle atrophy, which had seen successful treatments using this science. Dr. Kolb explained that Jacob would have to be on another drug called Riluzole/Rilutek for 30 days before he could be in the clinical trial, so we started that drug immediately and began our wait. Mid April, we drove to OSU for evaluation and awaited approval from IONIS.
By the time we received our first treatment of ION363/Jacifusen, Jacob had lost the ability to walk without assistance from a rollater/walker and other muscle weakness had began to show, such as shoulders and arms.
We officially began treatment on May 9th 2022. Our second was June 6th, and our third was on July 25th.
We are extremely excited and blessed to say that Jacob’s progression seems to have slowed. His situation has not improved, but he has not deteriorated as quickly as the doctors had expected either. We are convinced that our faith, coupled with this amazing Jacifusen treatment is working and we are expecting a full recovery!
We are thankful for the relationships we have gained through this trial. We know God truly has this and we thank Him in advance for His miracles, grace and mercy!
Joshua 1:9
“…be strong and courageous! Do not be afraid or discouraged. For the Lord your God is with you wherever you go.”
I will continue to keep everyone informed and up to date on our progression throughout this journey.
