SAN ANTONIO — Two years of raising a child with a rare genetic disorder has given Flor Ramirez a unique perspective.
Flor is a former KENS 5 employee, and as colleagues, we have helped raise awareness of her daughter, Mirlee's, condition, Apert Syndrome. It's a condition that causes the fusion of bones in the skull, hands and feet.
Now, at two years old, Mirlee Janice Ramirez and her beautiful smile show how far they've come since KENS 5's Sarah Forgany first interviewed her mother in 2022.
"She has excelled and met goals. She's running. She's playing. She's balancing herself," Ramirez said.
Mirlee was an infant two years ago and Flor was trying to figure out how to be a new mom and how to navigate the surprise of baby’s disabilities.
"So many fears...what the healing process is going to look like, because as she gets older, it changes," Ramirez said.
Little Mirlee has gone through seven surgeries in her young life and receives continual therapy from Children's Rehabilitation Institute TeletonUSA (CRIT).
Occupational Therapist Marites Navarro Graves says Mirlee has made incredible progress.
"She can move her arms, but also feeding, eating so she can hold her spoon better," Navarro says.
Navarro has more than 20 years experience and has been with CRIT since it first opened in 2014, serving only a few families at that time.
"Our populations are mostly with cerebral palsy, neurological musculoskeletal disorders," Navarro said.
The organization now serves over 350 patients all over the U.S.
"We serve the whole family, not only the patient itself, because when you have a disability at home, it has an impact on the whole family," Ana Hernandez, CRIT Business Development Manager, said. "We see miracles everyday happening here in all types of therapies."
Ramirez considers her daughter one of those miracles. But, outside of the warm, welcoming and colorful walls of the CRIT facility, Ramirez has a much different experience.
She says she has endured bullying in public places from both kids and adults and doesn't feel comfortable going to the playground.
"Now that she's growing and she's getting older, she's more aware of what's going on," Ramirez said. "It's very difficult as a mom to see your daughter go through that."
Ramirez says she understands differences in perspectives and says she welcomes adults and children to walk up and ask her questions, instead of just staring.
"Sometimes it may seem a little uncomfortable on both parties but it helps us to educate children," Ramirez said.
In the meantime, Ramirez says her daughter is breaking barriers and conquering new skills every day.
"I never thought that I'd see my daughter riding a bike ever. She's having the best time of her life… to her, that is such a big accomplishment."
If you would like to support Mirlee's journey, please visit this GoFundMe link.