Meet my granddaughter, Hattie — silly, sweet, snuggly, and just a little bit sassy.
Hattie is three years old and was diagnosed with PURA Syndrome, a rare neurodevelopmental disorder, at just 18 months old. She is one of only about 840 individuals worldwide diagnosed with PURA Syndrome.
But Hattie is also an exception.
There is no single mold for someone with PURA Syndrome. Many individuals are nonverbal, experience significant delays in crawling and walking (or may never walk independently), and often face moderate to profound intellectual disabilities.
Our precious Hattie knows no limits.
She walks, talks, jumps, dances, sings, counts, and does her very best to keep up with her five-year-old brother. She has low muscle tone and works hard in regular physical and occupational therapy. She often stutters, is very shy, and is still tackling potty training like the determined little fighter she is.
And like every PURA family, we live with the unknown. What does the future hold for her? Will she develop seizures, as many of her PURA peers do?
PURA Syndrome was only discovered 11 years ago, and research is just beginning to gain momentum thanks to successful fundraisers like this one.
While Hattie’s challenges are small compared to many of the other PURA-perfect children around the world, we stand alongside every PURA family to raise awareness, support one another, and fund the research that will shape a brighter future for all of our children.
To whom much is given, much will be required.
Kris Magill
