Losing a child is a loss like no other—the most devastating experience a parent can face. And for one daddy who lost his little girl to mucopolysaccharidosis, a very rare genetic…
Everyone knows lions are the kings of the jungle/mountain/movie studio. They're brave and ferocious! "Lion" not only describes the personality of one fun little boy living with Hunter syndrome (MPS…
“Idiopathic Pulmonary Fibrosis: Partnering with Your Doctor,” is an interactive program for people diagnosed with idiopathic pulmonary fibrosis (IPF) and their caregivers. And you know what's even more awesome about…
Kelley Fox is 23 years old, but developmentally she’s only around 5 or 6 years old. She lost half of her brain due to a disorder called tuberous sclerosis. The…
I'll admit, I don't have sickle cell anemia, but I do have a bad habit: I don't ask for help. No matter the situation—maybe my car has been towed, or…
Kids with spinal muscular atrophy (SMA) have a hard time with an evaluation method known as "pair-matching tests." They have a harder time identifying what number, letter, color, or object…
“Catching some Z’s.” “Crashing.” “Hitting the sack.” “Getting some shut eye.” “Zonking out.” “Getting forty winks.” We have a lot of idioms for sleep. On average, we spend one-third of our…
I first became aware of the bleeding disorder hemophilia when I was in high school reading about Nicholas II, the last Russian tsar. His son had severe hemophilia B, which…
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