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Jersey Mom's Emotional Rollercoaster Raising Son with Rare Genetic Condition
11 Nov
Summary
- Jersey mother raising 8-year-old son with Sotos syndrome
- Son is size of 14-year-old, also has epilepsy, autism, and behavioral difficulties
- Mother experiences "mish-mash" of joy, drama, love, and grief for what could have been
As of November 11th, 2025, a Jersey mother named Rachel Hughes is raising her 8-year-old son, Jack, who has Sotos syndrome, a rare genetic condition that affects about one in 14,000 children. This condition causes overgrowth in childhood, developmental delays, and learning difficulties.
Despite his young age, Jack is already the size of a 14-year-old. In addition to his physical differences, he also has epilepsy, autism, and behavioral difficulties. Ms. Hughes says that while Jack is a "loving and wonderful" child, caring for him has been an emotional rollercoaster.
"You have this relentless hope that things will be okay, that you can create the best life you possibly can for them," she explains. "It's such a mish-mash the whole time of joy and then drama and then love and then grief for what could have been."
As Ms. Hughes continues to navigate the challenges of raising a child with special needs, she remains steadfast in her determination to provide Jack with the best possible life.
