DALLAS — When Charlotte Brooks entered the world five years ago, she didn’t come out crying or screaming. She was completely blue. Her umbilical cord had wrapped around her neck, arms and legs.

For 26 minutes, doctors performed CPR on the newborn before she was intubated and airlifted to a neonatal intensive care unit 150 miles away. Charlotte survived, but she was diagnosed with cerebral palsy and is deaf and blind.

She and her parents, Stephanie and Kameron Brooks, have been no strangers to hospital visits. In April, Charlotte was admitted to the hospital with multiple viruses that took an intense toll on her body, and her lung capacity hasn’t returned to normal.

Advertisement - Continue Reading Below

She was recently discharged from the Children’s Medical Center Dallas and returned home, greeted by her three siblings and their dog, Maggie. She almost went straight to sleep once she finally returned to her bed covered in a pink comforter. She likely has around six months to live.

“Is this her telling us it’s time to go?” Stephanie asked.

Charlotte’s parents are making her final months meaningful. But they have already cemented her legacy: They have started a clothing company called The Charlotte Letter that makes adaptive clothing, providing dignity and accessibility for children with disabilities.

Restoring Charlotte’s dignity

It all started at an Olive Garden in Sherman. Stephanie and Kameron Brooks were dining with their children when Charlotte, who was around 4 years old, started to have a seizure.

She was wearing a pair of overalls that weren’t easy to remove. Her parents had trouble reaching her diaper. They had to completely undress her to give her the rectal medication she needed to interrupt her seizure.

“We just felt like that took away her dignity, and there had to be something that would help having diaper changes in public,” Stephanie said.

The couple wanted to make their daughter’s clothing more adaptive — designed around the needs of her disabilities. They sent out a Facebook request for a seamstress to add a zipper to one of Charlotte’s rompers.

They met a woman in an assisted living facility who took on the project. Once they saw the benefits of the zipper, they took their idea to a manufacturer in Dallas.

“The response has been absolutely insane in regards to people being so interested in, ‘What do you mean adaptive clothing?'” Kameron said. “It’s been a very educational moment (for) the general public as to why this is so necessary for kids.”

The Charlotte Letter Clothing Company started as a Facebook group in November 2019, where the Brookses would post updates about Charlotte’s health for their family and friends. The name is a play on The Scarlet Letter. In the way the scarlet “A” is the first thing someone notices, so is a physical disability, Stephanie said.

The Charlotte Letter sells clothes and accessories geared toward kids ages 4 and older. Infant and toddler clothing is primarily still accessible — designers expect children that young to still be wearing diapers, Stephanie said.

The company sells rompers with access for a feeding tube that is typically inserted into a patient’s stomach. The rompers also feature zippers for quick access to diapers, and dropped waistlines that don’t catch onto feeding tubes.

All of their clothing is designed with fun patterns and colors so the children wearing them can feel confident about what they have on, Kameron said.

The Charlotte Letter is an online-only store, but the couple often bring their clothes to pop-up events at therapy clinics and conferences. The Brookses’ goal is to get their clothing in more hospitals. The Brookses provided Children’s Medical Center Dallas with 400 feeding tube covers.

Brenda Barrio, an associate professor of special education at the University of North Texas in Denton, said clothing should be thought about in the same way architecture or education is framed — there should be universal design.

Adaptive clothing is great for everyone, she said, because at some point, everyone may experience difficulty getting dressed. “I think it’s extremely necessary,” she said. “I applaud those that are doing this, but I think more needs to be done with other clothing companies, as well.”

Katie Ireland, a Kansas City-area resident whose 9-year-old daughter wears Charlotte Letter clothing, says, “Kameron and Stephanie thought about what our kids” need as they age, and how “to make life easier for parents. … It just really makes a difference.”

Charlotte’s legacy

Stephanie and Kameron have four kids, and their youngest was born in June. Stephanie said she was afraid to have more children after Charlotte’s birth because she was carrying a lot of trauma.

“My body was having a hard time accepting her as alive and just always preparing for her to die,” Stephanie said. “That was something I didn’t realize until my second one came along.”

Their second child, Lincoln, 4, has been a helper with her older sister. Lincoln likes to join Charlotte in her bed, holding an iPad for both of them to watch Disney shows and positioning her stuffed animals to just the right place. Lincoln slept in Charlotte’s bed every night while she was in the hospital.

Oftentimes, it’s easy for people to only think of Charlotte in terms of her diagnoses, Stephanie said, but there’s much more to her.

Charlotte can partially see about a foot in front of her face. She loves to cuddle and watch Disney princess movies. She enjoys any show that has water because the color blue captivates her. She lights up when interacting with others and always has a smile on her face.

“What she does experience of the world just brings her so much joy, and it’s just incredible to see,” Stephanie said.

A team of nurses helps take care of Charlotte. Stephanie and Kameron, candid about their family’s experience, often post Facebook updates for family and friends. “It’s actually kind of given us more of an eye-opening to know we’re not alone in this,” Stephanie said.

The past several weeks have been particularly draining on the family. Kameron splits his time between Dallas, where he’s close to the hospital, and Sherman, where he does business and where Stephanie and Charlotte’s siblings are.

Stephanie and Kameron haven’t seen much of each other the past few months, spending only a handful of nights together. But they said they are grateful to have family and friends who are supporting them.

“Stephanie is a phenomenal mom. She’s a phenomenal wife,” Kameron said. “So whenever you have a woman like that, who is as strong as she is, I know that she can make it. It may not be easy, but I know that she can do it.”

The Brookses are still facing difficult conversations. “If you had six months left with your kid, what things would you do?” Stephanie asked.

They have big bucket-list dreams, like taking Charlotte to New York Fashion Week and Disney World. They want to use the time they have to show Charlotte how loved she is.

“She was born dead,” Stephanie said. “We’ve always been borrowing her. This has been extra time we were given with her. She’s had such an impact on our lives and other people’s lives, it’s just so easy to see why it was worth it.”

© 2022 The Dallas Morning News
Distributed by Tribune Content Agency, LLC

Read more stories like this one. Sign up for Disability Scoop's free email newsletter to get the latest developmental disability news sent straight to your inbox.