WICHITA FALLS, TX - Sickle Cell Anemia.
It's a rare blood disease that once diagnosed is incurable
Now there is a group, working to bring an end to the deadly disease.
Malik Waldon has been battling sickle cell anemia for 21 years.
"Sometimes just walking around just moving just trying to stay active," said Waldon. "You know like normal people it's difficult it's just like because you're always in pain and you try and do what everyone else does but the pain is always there but you just keep trying to push through."
The disease is rare, with less than 200,000 diagnosed world wide.
"It's been a little bit difficult to explain to people that I can't do everything that they do and that i need to do certain things to take care of myself," said Waldon.
The life expectancy for someone with sickle cell used to be 20 years.
Something Waldon has outlived.
Janis Waldon is Malik's mother, and is also the founder of the Wichita Falls sickle cell support group.
"No one wants to see their child in pain," said Janis Waldon. "When you can't do anything for them you really don't know just what to do."
So to bring awareness to her son's illness, she's hosted a health fair where people could come to give blood, talk to vendors, and more importantly help fight the deadly disease.
"Having to travel back and fourth to to Children's you know as a baby and to a young adult there was no support for Wichita Falls," said Janis. "I know we are not the only family that is involved or you know even has this disease."
Treatment can be complicated.
"They're using bone marrow transplants as well as a new medication that they are using to kind of treat the pain they are also using blood transfusions," said Janis Waldon.
With only two percent of people on the national bone marrow registry, that leaves people who need it most waiting for their turn.
"They're just waiting to find a donor," said Malik Waldon.
There is no cure for sickle cell, but Waldon chooses to fight and he gives thanks to his family.
"Being surrounded by them and seeing them smile and happy and everything just keeps me motivated," said Malik Waldon.
If you want to become a bone marrow donor, click here.