Two girls in Virginia have the same rare genetic disease. Their families have bonded over their shared challenges and determination to help their daughters.
Three years ago, Katie Gregg’s maternal instinct told her something was amiss. Her chubby-cheeked, blue-eyed daughter Lilly wasn’t hitting all her milestones as an infant. Sitting up was hard. She’d topple over when crawling, and as she got closer to 1½ years old, she’d pull up on furniture but not take steps.
But above all, it was the coincidence of their experience around their daughters’ disease — as well as the serendipitous proximity of their homes — that truly bonded them. And they desperately wanted to raise awarenessspecific type of HSP and support research to find treatment and a cure. So the two families in January established theChris Lorek tickles his daughter, 5-year old Blair Lorek. Blair was diagnosed with hereditary spastic paraplegia, a rare genetic disease.
For the two families, having each other has given them an emotional support system. They share their fears, tips and triumphs in navigating their daughters’ diseases. They talk about the latest research, the daily therapy and doctors’ appointments, the expensive equipment, as well as the battles with health insurance companies.
Several times a year, both families pack up and go to Richmond so Blair and Lilly can do a few weeks of intensive, daily physical and occupational therapy at a specialized center. Although both families have insurance, they spend up to tens ofSometimes, the moms get sad about how they have to carry their daughters to the top of slides at parks while also playing with their other kids.
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