Cameron's Story is shared by his mom, Valeri
Cameron was recommended for Early Intervention Services by his daycare when he wasn’t hitting the same milestones as classmates at 9 months. At the age of 1.5 in March 2023 he had an MRI and was misdiagnosed with Cerebral Palsy in April. We took a family trip to Disney World with friends and the day before we left, April 29th, 2023 was the last time he was able to sit by himself independently. The trip was warm so we thought that was taking a lot of his energy up, but it didn’t come back when we got home.
We got him into the University of Michigan the first week in June and he was admitted for 5 days where we learned he was having seizures and from another MRI there had been more brain deterioration from March. We did his genetic testing to find out it was Leigh syndrome and 98% of his cells are affected.
It was a devastating diagnosis that we still continue to process. We love him everyday and move forward as a family. He loves us with all of his heart and his smile lights up the room. Cameron is in a school now that is better equipped to meet his needs and will be turning 4 next month, an incredible milestone from what we were told 2 years ago.
