PORT NECHES, Texas — A Port Neches family is asking for the community's support as their daughter's terminal disease carries a huge financial burden.
In January 2022, the Depew family received the tragic news that four-year-old Mary Depew, also known as "Strawberry," was diagnosed with infantile Batten disease.
Batten disease is the name for a group of inherited nervous system disorders that most often begin in childhood, according to National Institute of Neurological Disorders and Stroke (NINDS).
Developmental skills such as standing, walking and talking may not be achieved or are gradually lost.
Other symptoms that can worsen over time include learning difficulties, poor concentration and progressive loss of language skills and speech, according to the NINDS.
Mary Depew was born a healthy baby with no signs of problems, but after the first 18 months, her parents noticed something was terribly wrong.
"She didn't start regressing until she was about 18-months-old," Tara Depew said. "When she started to regress, she was on the verge of walking and she was never able to take her first step on her own. Her foot would keep turning and she couldn't support weight on her foot anymore."
After visiting with three medical experts, the Depew family received news that their daughter Mary had been diagnosed with the rare genetic disorder.
"So, she gets nutrition through a vein in her chest and a G-J tube in her stomach. It really and truly has robbed our little girl of being able to live a normal life," Tara Depew said.
Mary Depew needs constant treatment and the bills for the Depew family have started to endlessly pile up.
"It's either gonna be money and gas or it's money for a hotel, just to be close by her. It's definitely added up and now we're in a situation where we've got a roof that needs to be replaced. It's actually leaking in our bedroom, " Timothy Depew said.
Despite financial woes and countless hours of extra care for little "Strawberry," this family remains determined to give their daughter the best life they can no matter what.
"We're just trying to make sure that we give everything that we can to her, you know," Timothy Dewey said. "We're sad because we know what's coming, but she's just living in her own world. So, you know we can't think of things in terms of our world. We got to go down and we got to live in her world. Do what's right for her. Do what we can for her."
A BBQ fundraiser is being held to benefit the Depew family on Saturday, Oct. 21, 2023.
The benefit is being held at the Redeemer Lutheran Church located at 4330 Crow Road in Beaumont from 11 a.m. to 2 p.m.
Proceeds will help the family pay for basic necessities and to help pay for Mary Depew's ongoing treatment.
