DALTON, Ga. — At first glance, Rebecca Hackney looks like a typical 7-year-old girl. But her mother Jessica Hackney said she’s “far from normal.”

At the age of 4 Rebecca, who lives in Whitfield County, was diagnosed with a type of mucopolysaccharidosis, or MPS as it’s commonly called. Mucopolysaccharidoses are genetic diseases caused by the body’s inability to produce specific enzymes. Rebecca has MPS 3A, also known as Sanfilippo syndrome.

“She has a special kind of genetic disorder that affects how her body handles some of the chemicals within,” said Dr. Wayne Darville with All God’s Children Pediatrics in Calhoun.

Darville has been Rebecca’s primary doctor since she was 2. He said the disease is terminal with life expectancy in the teens to early 20s.

“There is no cure or treatments for it,” he said. “We understand just enough about it to recognize we are not in a position to positively impact it.”

Hackney, 34, and her husband Jon are both carriers of MPS 3A. She said there is a 1 in 4 chance that a child will have the disease if both parents are carriers.

Their younger daughter Catherine, 4, does not have the disease, but she is a carrier. 

Jessica Hackney said she became concerned after putting Rebecca in day care when she was two-and-a-half years old.

“That’s when I started noticing she didn’t talk like other kids or interact,” Hackney said.

Shortly after, Hackney took Rebecca to see a genetic doctor at the Children’s Hospital at Erlanger in Chattanooga.

“The doctor looked at Rebecca’s wrist and face, then her body, and said she’s a storage baby,” Hackney remembers.

Hackney said the doctor discussed MPS and how kids store enzymes.

“We had blood work done to see which type of MPS Rebecca had,” Hackney said. “Then we went back for her DNA to have her sister tested. Altogether it took us four trips to the genetic doctor to get a final diagnosis.”

Hackney said the hardest thing was hearing the disease is terminal.

“It’s very hard knowing you’re going to outlive your kid,” she said. “But she’s taught me a lot, like not to worry about the small things, be happy with what you have, and to love every minute of every day.”

Rebecca is non-verbal. Her mom said she has the mental capacity of a 12- to 18-month-old. She still drinks out of a sippy cup and has to be fed unless it’s a snack or finger food.

Rebecca is a student at Bagley Middle School in Chatsworth where she’s in the impaired special education class. Her teacher, Moss Fountain, said she’s a good student.

“Although there are some verbal challenges, she’s able to communicate well,” he said.

Fountain said Rebecca loves books and responds well to them.

“She is so expressive with her eyes. I’ve learned a lot from Rebecca, she brightens our day,” he said.

Fountain said Rebecca’s parents have been the “best parental advocates for a child with special needs.”

“The family is very strong,” he said. 

Jessica Hackney said Rebecca “lights up my world.”

“She’s everything to me and my family. I’m very fortunate to have a very good support system,” she said.

Hackney’s parents are very active with help, and when she needs a break her sister takes Rebecca for the weekend.

Johnnie Cannon, Rebecca’s grandmother, loves singing to her. 

“She’s my little angel. She’s bright, sweet and mean sometimes, but a gift from God,” Cannon said. 

Jessica Hackney said she would encourage parents to talk to their children about how some children are different. 

“Other kids (Rebecca’s) age don’t understand so they ask questions, which I don’t mind, I’ll answer any questions,” she said.

Hackney said she wants people to understand her daughter and educate themselves on rare diseases.  

“Just because she doesn’t understand how to play with (kids) doesn’t mean she doesn’t want to,” she said.

Darville said Rebecca’s parents being proactive was important.

“If something is going on with your child and you’re not clear about it, keep pressing for information,” he said 

Darville hopes MPS and other rare diseases will receive more attention. Jessica Hackney agrees.

“I didn’t know about MPS before Rebecca,” she said.