A month ago we found out insurance has approved IVIG treatment for Jarrod. We have known this was the one treatment that could restore some quality to his life. We are thankful the Lord has made a way for him to start this treatment.
Two years ago Jarrod flew what we thought was one of his last flights leading up to his pilot’s license… but it ended up being the last time he flew. He went to bed one night and (what seemed to be overnight) suddenly was very “sick” and became mostly confined to bed for months, needing help to even walk…not able to read, converse, loss of memory, process information, pain everywhere. His life came to a sudden halt.
Jarrod isn’t a complainer, and with Guinevere being so sick, Peter’s daily battles, we had just moved, the girl’s struggles…we look back and see red flags we missed months before that.
When his health collapsed, with much prayer and after seeing several doctors here, and getting several diagnoses, we took him to Peter’s doctor in New York.
The doctor did a lot of testing, he found Jarrod was dealing with several active strains of Lyme disease…having affected his nervous system and heart, which probably was the cause all the other things he was dealing with- peripheral neuropathy, encephalopathy, autoimmune encephalitis, upper respiratory issues, dysautonomia, Small-fibre neuropathy, liver disease and other autoimmune.
After months of antibiotics and trips to Dallas for immunotherapy, Jarrod improved some, was walking better, breathing better, and sitting up.
A number of years ago when Guinevere was diagnosed with Lyme disease, the doctors were having trouble finding treatment that helped her, one doctor decided to do some genetic testing on the children and found mutated genes that cause immunodeficiencies.
He said that living with a weakened immune system, their body’s natural defenses are impaired, making it easier for pathogens to take hold and cause illness.
The doctor felt they were healthy, for what the genetic testing showed, but said it was only a matter of time. I did not understand at the time what he was really telling me. But we did know our children and their health were in the Lord’s hands. Knowing they are each “…fearfully and wonderfully made; Wonderful are Your works, And my soul knows it very well.” Psalm 139:14
There has been a lot of pain and surrender, trusting and praying, many tears, doctors, tests, treatments, diagnoses…what seemed like endless suffering at times.
There have been treatments that brought some relief from symptoms, any improvement or help we have been thankful for, he is much better than two years ago but still not functioning well. The autoimmune encephalitis causing some of the most difficult symptoms, along with the extreme fatigue and Dysautonomia.
We have known from his first diagnoses, that IVIG was the one treatment that could potentially help Jarrod, giving him a better quality of life, but we needed a doctor in Texas to work with.
The Lord provided that doctor in January of ‘23. The neurologist has patiently helped and been a blessing. There were medicines and treatments to try first before insurance was willing to consider this treatment for Jarrod.
We are very thankful the Lord has opened the door for this treatment to start.
His first treatment was last week, a four day infusion. The nurses come here to administer it, a blessing for Jarrod to be able to stay home for it. It does cause some side effects at first, that should be less with each treatment.
We trust the Lord to bless what He has provided.
“Your eyes have seen my unformed substance; And in Your book were all written The days that were ordained for me, When as yet there was not one of them. How precious also are Your thoughts to me, O God! How vast is the sum of them! If I should count them, they would outnumber the sand. When I awake, I am still with You.” Psalm 139:16-18
Our Journey 