The story of Courtney
Clyde was a regular baby and hitting all the normal milestones for his age. Sitting alone, walking along with table top help, babbling, & ect. We celebrated his first birthday and he was off to daycare. (2022)
The FIRST ever illness he got was covid-19. (Which we now know is what “sparked” the Mito)
He was down and out for a week and it ran through our whole house-hold. While the adults got better it seemed Clyde did not.
Not able to sit alone, crawl without ataxia (Ataxia is a neurological sign consisting of lack of voluntary coordination of muscle movements), and walking and babbling were gone.
As his parents we KNEW something was wrong taking him to the ER we were told it is a post-viral syndrome and he will get back to normal in a month or two. After a scary high fever and his first seziure at a ER trip we learned having to advocate for your kid is the only way to get what you want. After pestering our family doctor and pediatrician they finally agreed he isn’t getting better for this to be post viral syndrome.
We got referred to sick kids and the tests begun. Every test under the sun (cause listing them would take way too long seriously)
After so many test, unknowns, and a YEAR of tests we got the genetic testing back for Mitochondrial Diease FDXR GENE. (2023)
We are now with a specialist at McMaster hospital for children.
Clyde is 3 now and notback
where he was when he got sick. We still need to sit with him or put him in a supportive chair to avoid falling over. Babbling is starting lots again, walking is unfortunately only with his walker or us holding him. We know now that his optic nerves are small and underdeveloped and can’t be fixed. Eye sight is unknown but need to be prepared for him to be blind. Bi-annual tests making sure all organs and blood is as it should, and continued pt/ot appointments is all we can do for now.
Through everything tho Clyde has been such a trooper and still a happy boy.