JACKSON, MS (WLOX) - It was a day to remember for many families dealing with rare diseases. These families met with Governor Phil Bryant at the State Capitol on why they want to bring attention to conditions that they’re facing.
Along with passing out king cake and visiting with Governor Bryant, Hunter and his family explained to lawmakers the rare condition he faces, Russell-Silver Syndrome, which affects his growth.
“He learned to walk later and talk later. He was so small that it was hard to do everyday life,”said Hunter’s mother Bethany Bingham.
Amber Olsen from Ocean Springs is an active fund raiser for rare disease research. Her daughter Willow suffers from Multiple Sulfatase Deficiency. Olsen is hoping more effort will be put forth to find solutions.
“There’s actually more people with a rare disease than cancer and AIDS combined, so we’re trying to work together to get some of the things we need to get done like newborn screenings and more research, more insurance coverage and things like that,” she explained.
State Senator Philip Moran helped pass a bill last year for the state to study how many people have rare diseases. Now, he wants to see more money used for research in Mississippi.
If they have the proper funding, research will soon find a cure. And that’s what we’re hoping for to put money in place, so that the Medical Center can research it, and ultimately, one day eliminate this, so our children don’t have to suffer from these diseases," he said.
While much work still needs to be done to find cures, these families enjoyed their time together and being around others who understand what they’re going through.
“A lot of people don’t know about all the diseases that the children have until we bring it up, and then they still don’t understand what it is,” said Bingham.
A big reason these families with rare diseases wanted to come to the capitol was to spread awareness and let others who think they may have rare disease know that there are options available.
For more information on information about rare diseases in Mississippi, visit here.