Rare Disease Day Proclamation In Ocean Springs

Two very special children and their mothers were honored tonight at an Ocean Springs City Council meeting. News 25’s Hank Davis was there to get the story.

A special proclamation by the City of Ocean Springs recognized ‘Rare Disease Day’ and special guest honorees Willow Cannan and ‘Little Levi’ Krystosek were there for the big event.

Levi has a rare, extreme form of dwarfism, but that doesn’t stop him from being larger than life. Willow has a metabolic lysomal storage disease, so rare that there are only 22 known cases in the world. “It makes me feel amazing for kids like me to have a day because what we’re trying to do here is spread awareness about the diseases,” said Levi.

Willow’s mother, Amber Olsen, said, “When you’re diagnosed with something ultra-rare there is no chemotherapy. There is no treatment. Doctors told us there is no treatment. There’s nothing that can be done. Then you go and you start looking and digging and you can find researchers who can work on the disease, but then they don’t have any funding for that.”

That’s why the two mothers are headed to the nation’s capital next week for ‘Rare Disease Week’ to speak with congressmen and senators about setting aside funding for that research. This kind of action has become the norm for these women. Levi’s mother, Dona Krystosek, has even dedicated her career to helping children with rare diseases. “It’s a bigger picture. Not only am I helping him and giving him a better quality of life, I’m helping other children, children that sometime I never get to meet.”

To learn more about these children and their battles visit ‘Little Levi’ and ‘Warriors for Willow’ on Facebook.

Source: http://wxxv25.com/2017/02/21/rare-disease-day-proclamation-ocean-springs-2/

Little Levi with his mom, Dona Kystrosek

Little Levi with his mom, Dona Kystrosek