OCEAN SPRINGS, MS (WLOX) - A bill that was passed by the House and Senate on rare diseases is now on the governor's desk for his signature.
Senate Bill 2463 creates a Rare Disease Advisory Council that will document everything on rare diseases in Mississippi, from its occurrences to treatments. That information would then be handed to government agencies and medical professionals to better help patients.
Angel and Josh Myers said they are pleased with the bill that would help people battling rare diseases. They are the parents of Sophia Myers, who lost her life to a rare brain tumor called diffuse intrinsic pontine glioma, or DIPG.
"I'm so glad that it's finally being done. This council is going to be created to get research and stats and stuff like that and that all seems like it would be easy to get, but we've asked so many times different hospitals and stuff to get that information and it's very hard to receive," said Josh.
He recalled, "I just remember when we first went to Jackson. It was overwhelming. You don't know what to do or where to get information from, and I think this is going to centralize this a lot better."
"That is the best step in the right direction that we can take. The fact that people in Jackson are looking at diseases like DIPG and wanting to make change, and wanting to effect change that matters to people like us, it's huge," said Angel.
Angel said the new legislation would help medical providers give better treatment and create community awareness of rare diseases, ultimately helping to raise funds towards finding cures.
"To know things like that, to make them care more about things like that, that maybe they can put their money or their investments when they get an opportunity to give back to things likes DIPG research, or what Willow has or the ATRT that Ariana has," said Angel.
South Mississippi Senators Brice Wiggins and Philip Moran are sponsors of the bill that is now on the governor's desk for his signature.
A total of three children in Ocean Springs died from DIPG. Three other Ocean Springs children are also fighting rare diseases. One of them has what is considered an ultra-rare disease.
Read the complete bill below: