In a touching turn of events, the Vodafone Ghana Foundation has made a profound impact on the life of Oleki Gaduga, a 12-year-old girl from Ada. Oleki was born with Infantile Blount Disease, a rare disorder that causes leg bowing and difficulty walking. Oleki had been suffering from severe pain...
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Farzana Nisha was about to lose her patience. She could not wait for the three-hour heart operation to end so she could see her two-year-old son. Fear overcame her after three hours and there seemed to be no end in sight to the surgery. Her son Rishab Prakash had a...
Chloe Bush is an adorable two year old that I visit and read to through a non-profit here in town called Circle of Hope. She has a terminal disease that is the #1 genetic killer of children under two. Chloe has surpassed that scary birthday but is still terribly ill...
WATERTOWN, N.Y. (WWNY) – She may be small, but she sure is mighty! Madyson Siddall, from Watertown, is about to turn ten. She loves pranks, dogs, and stuffed animals. But Madyson has had a tough year. In February 2020, her legs began hurting, and she was feeling tired all the...
As the mom of a 16-year-old daughter with a rare disease, I’ve had to learn how to accommodate Grace’s limitations. Many daily activities became much harder after she was diagnosed with Lambert-Eaton myasthenic syndrome (LEMS). My goal is to make her life with LEMS as easy as possible, so I began researching how...
It was a landmark day they never expected to celebrate. Tristan Hall’s family were told he would not reach his first birthday – so they were delighted when he not only surpassed that but is now the proud owner of his first tooth. The brave tot celebrated his birthday in...
Rare diseases can’t wait. Rather than sit on the sidelines, many patients are taking the initiative to do what they can to accelerate the diagnostic process, improve understanding of their disease and spark research into potential therapies. The 2023 NEXT Report from nonprofit advocacy group, Global Genes, shares stories of...
WHITBY — It’s been only a year since Katie Sutherland lay in a hospital bed clinging to life, but the Whitby teen is getting ready to compete in an international sports competition. Katie, 16, underwent a double lung transplant last year and since then has been building her strength back...
WICKLOW town joined the global chain of lights celebrating Rare Disease Day
Josh Bigham was saved, not by fire and brimstone, but by flamebroiled cheeseburgers and Coldstone Creamery. He’s found heaven in the sugary goodness of rocky road ice cream, the hickory-smoked flavor of a perfectly grilled steak and the well-balanced blend of a sweet and spicy barbecue sauce. For 15 years,...