BALLSTON SPA, NY (NEWS10) – “The child’s bones are eventually squeezed off. The bone instead of breaking down like normal bones would do just keep building up and building up,” said Barbara Wersten, of Ryan’s Miop foundation.
It’s called malignant infantile Osteopetrosis, a disorder that killed Barbara Wersten’s son Ryan in 2006. After he passed way, she started the Ryan Wersten Miop foundation and this 5k called Ryan’s run to raise awareness and support for families dealing with this rare but devastating disease.
“We help fund what bills they may incur during this time, and we also support a Dr. Orchard out at the University of Minnesota who is fighting to find a safer cure for this disease,” said Barbara Wersten.
When dealing with Miop becomes too much to handle for the family, Wersten said Ryan’s foundation is there to help keep the situation in perspective and the family continuously progressing towards better times.
“Just remember that their child is the most important thing, and to just focus on their baby. And whatever that means just hug them every day and care for them and we’ll help you take care of the rest,” said Barbara Wersten.