LUBBOCK, TX (KCBD) - It's a disease that has affected less than 1000 people in Medical History.
But, for one Lubbock family, Alstrom Syndrome comes in the form of one bubbly, beautiful 6-year-old girl.
Bryce Johnston was diagnosed three years ago.
While an early diagnosis can help prevent some side effects of the disease, most children don't live past their late teens. By spending just a few hours with Bryce, you would never know she was battling an aggressive, fast moving disease that has already started taking over her tiny body.
Cassie, her mother, said, "Bryce was born completely healthy, at 5 and a half months old, we looked down and her eyeballs were just moving around in her head."
That was just the beginning of dozens of tests and 9 different diagnosis.
Cassie and Lynn would spend the next two and a half years desperately searching for an answer, finding nothing.
Lynne said, "It's not that they (doctors) didn't want to help us, they just didn't know how to."
Cassie said, "We came across Alstrom Syndrom and reading through the list and it was describing Bryce."
Alstrom, a virtually unheard of disease, affects children causing blindness, deafness, Type 2 Diabetes, Congestive Heart Failure, COPD along with liver and kidney failure.
Cassie continued, "when we finally got the diagnosis, bittersweet would be an understatement because because we were so devastated that she had Alstrom Syndrom bSyndromeere so relieved, almost excited because we finally had an answer. You can't stop the medical complications that are to come and you can't reverse them once they start."
Lynne said,"We are able to put together a plan to prolong the affects of Alstrom Syndrome."
Cassie, "She takes ten different medications every day."
Bryce is learning to live life with Alstrom. She's learning Braille, ballet and how to just be like any other kid.
Lynne said, "I was just telling her this last night, she's the most positive person I know."
"We don't know if a cure will come in her lifetime but when it does, she will be a part of that. That will be a legacy she's leaving behind." said Cassie.
Lynn and Cassie have started a non profit organization, Alstrom Angels, to help fund research for Alstrom syndrome and help diagnose kids who may be battling this devastating disease.
Saturday, Feb. 21, night the charity is hosting their 3rd annual Night for Angels benefit dinner.
The event is inside 4 Bar K, from 7 p.m. until midnight.