HATTIESBURG, MS (WDAM) - This Christmas was different for one Hattiesburg family.
The Jackson family was told by doctors on Dec. 13 that their 3-year-old Braylen was diagnosed with beta-propeller protein-associated neurodegeneration. It’s a disorder that that is characterized by childhood developmental delay and seizures, with adult-onset movement problems, including dystonia and Parkinson’s disease, according to NBIA Cure.
“But he knows, he knows we love him,” said Braylen’s grandmother, Traceola Jackson.
Braylen’s mom, Jasmine Jackson, said that she wants to bring awareness to the rare disease, since Braylen is the only child with the disorder in the state of Mississippi.
“Is it true he won’t talk, he’s not going to walk,” said Jasmine.
Traceola said that you have to have patience dealing with a child with a BPAN disorder. Braylen’s older sister, Alana Jackson, said she’s honored to be his big sister.
“Not everyone has a brother like this, and I feel special because my parents might direct with him more than we do but we know why,” said Alana.
Alana said that when Braylen and the rest of the kids in the family plays, Braylen can’t be included. She said that even though he can’t do the things that the other kids can, his smile lights up everything, making up for all of the lost play time.
“I just want my mom to know that we are all strong, like my mom she has so many supporters,” Alana said.
Braylen’s family said that this Christmas they tried to cherish every moment with the little one.
“Every day is important when it comes to Braylen, every day, every second is important to him,” said Braylen’s aunt, Reshae Ellzey.
Braylen’s father said this Christmas is special.
“Oh its special every Christmas, but he’s 3-years-old now, but we’re just trying to make memories because it could be his last one,” said Chuckey Ellzey.
The Jackson family wants to bring awareness to the Pine Belt for any family that may experience this disorder in their own home.
The family also asks for you to contact them if you have any information about the rare brain disease disorder, Jasmine Jackson can be contacted at firstname.lastname@example.org