Oh Poppy! To know her is to love her. Her smile just lights up the room.
Poppy Hill was diagnosed with Jordan’s Syndrome at 6 years old. Like many of the other children who have the gene mutation, Poppy has global developmental delays, hypertonia, as well as sensory, sleep, and behaviorial issues.
It took countless tests, assessments, and therapies to finally get their answer as to why there was something happening to their child.
“Poppy has a gene mutation,” her Mother Michaela wrote on her blog, “at conception what should have been a circle came out as a square but on a microscopic scale. One small, fluke change in her DNA.”
But none of this keeps Poppy from flashing that bright smile and making someone’s day. Her Mom says empathy is her daughter’s super power.
The Hill family has been a big supporter of Jordan’s Guardian Angels and the groundbreaking research being done to find a treatment or a cure for Jordan’s Syndrome, but it was Rob who took that support a step further.
Poppy’s Dad decided at the end of 2020 that he would raise money for the research by walking, running, cycling, and swimming 2,715 miles. That’s the distance from the Jacksonville, Florida area where they live, to Sacramento, California where JGA is headquartered. Rob gave himself 121 days to complete the task and took off, completing 2,718 miles two weeks ahead of schedule.
His fundraising was so successful in fact he’s now taking the effort to a global level, challenging other families who have children with Jordan’s Syndrome to hit the road with him again in the coming months. Stay tuned for more on how to get involved!
Thank you to the Hill Family for all your support and for sharing your story!