“It’s a very rare disease,” Bryce said. “Heart failure, and I can’t see very well, and I take a diet every single day.”
“As she gets older, more and more systems of the body will become affected,” said Cassie Johnston, Bryce’s mom. “Right now vision is one of the first ones, and she has some usable vision now…but she will lose all of it over the next couple of years. Hearing loss generally starts about six to eight years old, so we’re watching that very closely.”
“It is so rare there is not a lot of support for funding for research for treatments and a cure for these kids,” Cassie said. “When Bryce got diagnosed, there were less than a $100,000 every year to try to find treatments and a cure, and that’s why we started Alström Angels because that just isn’t enough and we want to do something so that one day there will be a cure.”
“It will make such an important memory that she can recall and visualize in her mind,” Cassie said.
LUBBOCK, TX (KCBD) - For more information, visit Alstrom Angels.