In memory of Jackson
Jackson's Story
My wife Jennifer and I welcomed our 1st born Jackson Vandiver on 4/21/2023. He had to spend the first 2 weeks of his life in the NICU for failure to thrive. We brought him home 5/6/2023. From there till early April 2024 everything seemed fine. He was meeting his milestones and all. Our only complaint was he wasn’t a good eater.
In early April 2024 we noticed his eyes started to droop, which turned out to be bilateral ptosis. Two weeks later he started to shake and that’s when we took him to the ER at Prisma in Greenville, SC. He was there for two nights and they ran every test you can think of on him. The MRI showed consistent findings of Leigh Syndrome. Two weeks later we got a genetic test back that showed he had a mutation of the MT–ND5 gene. For the next 2 1/2 months we had him on the medication they prescribed.
Things were back to the way they were before April. During this time in June and July we were taking him to his physical therapy, feeding therapy and occupational therapy. His eating kept getting worse though. On 8/5, he wasn’t feeling well. So we decided to take him to the ER at Prisma. They ran a bunch of tests on him again, but on 8/7 he coded. He was placed on a ventilator. His MRI actually showed no new progression since the one that was done back in May. One test did come back positive on 8/9 for H-Flu. They started him on antibiotics to treat the H-Flu so that we could move forward with a G-tube. We ultimately had to put a trach in and G-tube.
He ended up having two infections with the trach. He had a seizure like moment in late September, and then a few days later closed his eyes and never opened them again.
Jackson was such a fighter through it all... H-flu, G-Tube, Tracheostomy, a metabolic episode, battling two different strains of bacteria, and seizure like activity. The doctors conducted another MRI on 10/1 and it showed disease progression and brain atrophy. Unfortunately, there was nothing else that could be done.
We brought Jackson home 10/4 on hospice care. He passed away in his mother‘s arms on 10/15 surrounded by family. He will always be forever missed and loved by his mom and dad.