Jackson’s Story
(as told by his parents, Kaitlyn & John)
Like most expectant parents, we spent nine months believing we’d have a completely healthy baby boy. We knew our life was about to change, but no one could have prepared us for what was to come.
Jackson arrived on June 3rd, 2023. We immediately knew something was wrong.
He was swollen from head to toe with very little movement and no crying. The NICU staff whisked him away for testing, but everything came back normal. We had no answers.
After 37 days in the NICU we were finally able to bring Jackson home following his first surgery – a hernia repair and G-tube placement. Still with no diagnosis, we were hoping genetic tests would reveal what was wrong. Days after being discharged, we received Jackson’s results, and our world came crashing down.
ACTA1-related Nemaline Myopathy. Jackson had a muscle disease that affects 1 in 50,000. To make matters worse, there is only one recorded case in the world with his exact mutation. It’s not inherited. “It just happens” is what we were told. “Expect the worst and hope for the best.”
At this time, Jackson didn’t move much, his cries were quiet, and he couldn’t manage his saliva. We didn’t know what his future would look like or if he’d have one at all. After his initial diagnosis Jackson was given countless other diagnoses including metopic craniosynostosis, vertical talus, club foot, arthrogryposis, kyphosis, dislocated hip, micrognathia and kidney calcifications.
We knew Jackson would need extensive therapies but had no idea where to go. Our favorite NICU nurse told us about Joya and that’s when we began to have hope for our son.
Joya began with an in-home evaluation, then weekly therapies. Jackson had a rough start, but in time he started lifting his arms, then turning his head. He had surgeries on both feet that required soft, then hard casts. As soon as the casts came off, he began to thrive. At 9 months old, Jackson has clearly showed us he is more capable than his diagnosis and he continues to defy the odds. Jackson is proof to us that prayer works.
Jackson’s now almost fully rolling, he’s always talking (or happily yelling). His trunk and neck control are constantly improving. He’s tasting different foods and loving it. He’s a living miracle and we’re so grateful God trusted us to be his parents.
We don’t know what we would do without Joya. His therapists encourage us as parents and give us confidence to keep going. They’ve become a huge part of our life and Jackson absolutely loves them.
Jackson has a long road ahead of him. He has another surgery planned in April and a total hip reconstruction when he’s 18 months old. This journey isn’t easy, but we are so grateful to have our team at Joya standing alongside us through it all.
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