Modern Miracles

We catch up with the Hextell family in Natomas.

By Brandy Tuzon Boyd

When Dallas Hextell gets in bed with his parents at 2 a.m., the two don't complain. Instead, they turn toward each other and smile. “We never knew he would be able to walk, let alone be running into our room in the middle of the night and wanting to climb into bed with us,” says Cynthia Hextell.

To Dallas' parents, his story is nothing short of a miracle.

Since his birth, Dallas struggled with developmental milestones. Then, at 8 months, he was diagnosed with cerebral palsy (CP), a potentially debilitating neurological disorder that affects muscle coordination. Cynthia searched online for ways to help her son and stumbled upon a clinical trial at Duke University where researchers were using stem-cell therapy to treat CP.

The Hextells had banked Dallas' cord blood, a source of stem cells, when he was born. At 18 months old he became the ninth child to undergo the experimental procedure, which returned his stem cells to his body through an intravenous transfusion. The results were evident within five days—he said “mama,” started crawling and laughed for the first time.

Dallas' story quickly made national headlines. At the time, the cutting-edge stem-cell therapy had not yet been approved by the Food & Drug Administration, but results looked promising. The family appeared on The Today Show, NBC Nightly News with Brian Williams, The Early Show and The Doctors. His case was also featured in Popular Science, Newsweek and twice by the Los Angeles Times.

Cynthia was elated when news broke this February of the first FDA-approved stem cell trial for treatment of CP. The Medical College of Georgia will treat 40 children with cerebral palsy (ages 2-12) using their own cord blood stem cells.

“This is what we wanted the whole time, why we went public with our story,” Cynthia says. “We want research done, we want to know how and why it's working, and we think it's going to help more and more children.”

A Mission of Hope

The Hextells launched their non-profit Dallas Hextell Foundation in November 2008. Already they have helped six different families raise money to participate in the study at Duke University. Because the expensive procedure is still considered experimental, it is not covered by insurance.

The Abernathy family from The Woodlands, Texas credits the Hextells and their foundation for enabling their youngest son to undergo the procedure last year. Jack, now 3, went from two-word sentences to singing 50’s songs and from not being able to sit up to walking with the aid of a walker.

“The Hextells gave us such hope as a family with a child not making progress,” says Jacque Abernathy. “Cynthia and Derak have become lifelong friends, and I hope to one day meet them.”

Meanwhile, 4-year-old Dallas has made strides in his own fine and gross motor skills. He is potty training, feeding himself and plays in the backyard with the family dog. Dallas receives physical, occupational and horseback riding therapies, but his parents believe he is going to be fine physically.

“To look at him, he's a typical little boy,” says Cynthia.

Cognitively, Dallas is also on track. He quickly outgrew a special day class and now attends a Head Start preschool program. Earlier this year, he started riding the bus home from school on his own. His parents understand how important it is for Dallas to be independent.

Dallas' speech is still delayed, but over the past nine months he has made great gains. Speech therapist Christina Michel-Albers says the preschooler has gone from using only five to 10 words, to consistently trying to make new words all the time.

“I have every belief he will be a verbal communicator,” Christina says. “But not without a lot of hard work on Dallas' and his family's part.” She adds, “But I know they are up for it.”

Cynthia and Derak say their relationship has been strengthened since Dallas' diagnosis. At press time the couple was getting ready to welcome a second son, Kai (due March 31). Dallas is excited about being a big brother.

Asked about their birth plans, Cynthia says, “We already have the cord blood kit, so we're banking this time for sure… It's a no-brainer.”

Brandy Tuzon Boyd is a local mom and freelance writer. You can read more of her writing on our blog page under the name "SactoWriteMama."