MORGANTOWN — Mia and Maya Stiles are two resilient little girls. The 3-year-old twins were diagnosed with Metachromatic Leukodystrophy (MLD) when they were 2.
That’s a rare neurodegenerative disease caused by a mutation of a gene. It affects development and growth of myelin, which works as an insulating cover for nerve cells throughout the human body.
Dakota Stiles, their father, said it essentially “short circuits” the brain, causing the girls to lose the ability to move on their own or speak.
Recently, the girls each received a pink wheelchair, their names embroidered onto the seats. Mon Health Equipment and Supplies worked with Stiles and Sabrina Gabler, their mother, to get these necessary chairs.
West Virginia Birth to 3 paid for the chairs for the family, who is from Bruceton Mills.
“It makes life a lot easier, and they’re really well put together. It makes it easier on them,” Stiles said.
Before, the girls would ride in a double stroller together. Stiles said with these new wheelchairs the girls can get around easier and sit more comfortably.
As the girls grow, the chairs can also be adjusted. The girls can be fed in the chairs, and Stiles said it keeps them from having to lay in a bed all day.
Jen Spiker, from Mon Health, said the wheelchairs were custom made for the girls through a manufacturer called Freedom Designs. Mon. Health’s wheelchair specialist made sure the chairs fit the girls, and were able to grow with them.
“The girls right now they are in a stroller. They also sit in beanbag chairs that are comfortable or just lay in bed. When they get in the chairs they are positioned properly, they are able to breathe a little better,” she said.
Spiker said she loves doing what she does, and loves to see that she can help make a difference for the family.
“I love seeing the finished project. I love seeing the girls comfortable. That means everything to me,” said Spiker.
Gabler said the girl’ s medical team consists of doctors at Ruby Memorial Hospital as well as a specialist in Pittsburgh at a children’s hospital. She was happy to see the girls in their new wheelchairs.
“They’re amazing. They’re wonderful. It makes them comfortable,” she said.
Gabler said she and Stiles noticed the girls were slow at walking when they were about 2. This led doctors to believe it might be a neurological problem or perhaps they were slow learners. Then, they quit walking all together. They had muscle spasms, and weren’t able to eat and quit talking.
“It’s not like a known disease so it is important that we get awareness out so people kind of know about it,” she said.
The disease is still being researched. Right now there are experimental trials available in Italy, according to the family. The girls’ parents are hopeful researchers will find an answer to the disease one day.
“It’s really all you have to do is keep hoping. Be patient and just take it one day at a time,” said Gabler.
Follow “Mia and Maya’s Journey” on their Facebook page.
