Michal, with her bright blue eyes, is one of only 20 kids in the world living with a rare genetic syndrome called PP2R5D. If that weren’t isolating enough, living in lockdown has been extra challenging for her family. For Michal, her isolation started four weeks earlier than the general population, accessing critical medical interventions puts her life at risk, and her families were hyper-aware of the world around them.
When Michal and her family entered Jordan River Village in June it was the permission they needed to feel like a normal family—not a family with a disabled kid or a family living through a pandemic—but simply a family who wanted to experience fun, support, and friendship.
Michal’s experience was not simply limited to herself–her brother had the time of his life and her parents experienced much needed respite and support from other families with children living with rare syndromes. The experience also impacted the Village’s volunteer counselors who had never before met a child living with PP2R5D. It is common, at the end of a camp experience for the family to thank the Village; this time, the volunteers thanked Michal and her family for coming into their lives, and allowing them to be part of her happiness.
Learn more about Michal and her family’s journey to discover her diagnosis.
