One out of ten Americans is affected by rare disease, according to The National Institute’s of Health: of that more than 50 percent are children. Today we introduce you to a husband and wife team connecting many of these Las Vegas families with unique and critical services.
Four- year- old Bradley Krshul was born with a rare brain condition that prevents him from walking, or sitting on his own.
His parents say he was able to build up his strength and better interact with his peers when he received a special chair, through the Little Miss Hannah Foundation.
His mom, Jennifer says, “We were lucky because those pieces of equipment are very expensive, and insurance doesn’t cover any of it.”
Carrie and Robert Ostrea started the “Little Miss Hannah Foundation,” in honor of their daughter, Hannah, who had a rare genetic disease, and needed special equipment, prior to her passing away at the age of three.
Robert adds, ” Our daughter, there was no cure for her, she had a terminal disease. Given those types of diagnoses, insurance companies and pharmaceutical companies are even more hesitant for families like us. It becomes heartbreaking sometimes because you look and it’s 750 dollars or one-thousand dollars for a piece of equipment because it has the name “special needs” in front of it, it increases in price.”
Through their non-profit the Ostrea’s provide special equipment and work to enhance the quality of life for other young children diagnosed with a rare disease or complex medical conditions.
Carrie says, “Having a medically complicated child is very isolating. You talk to most of our families, and they feel like they are the only ones who get it, we don’t want people to feel that way.”
Since they started the non-profit in 2012, they’ve held various events to raise funds and have provided 75 thousand dollars worth of equipment, and connected 112 families with more than 45 rare diseases.
Jennifer adds, “I admire Carrie and Robert for their strength. The devastation of losing their daughter, and the way they manage to honor her in helping so many other families, in a way that is truly needed.”
A family is able to apply for the equipment grant once a year. To find out more about the amazing ways they assist members of our community go to their website at http://littlemisshannah.org/.