Meet RH, who loves to celebrate

For more than a decade, RH’s care has involved collaborating with numerous specialists across the Children’s Health system to help a boy who cannot talk.

RH is a 11-year-old boy who loves holidays: Christmas, Easter, Halloween and the Fourth of July. At RH’s house, they celebrate one holiday or another – all year long.  

“Christmas and Halloween are his favorites. We’re either dressing up or wishing each other a Merry Christmas most days,” RH’s mom, Jessica, said.  

He also loves his twin sister, Clardy Ruth, and little sister, Dot. They adore him, too. And so does RH’s care team at Children’s Health℠.  

“We had our first appointment when RH was 11 weeks old. He has always seen multiple specialists, and they all do a beautiful job of building an individual relationship with him, which means the world to us,” Jessica said. “RH was born with cerebral palsy, and when he was 8, we learned he also has a rare genetic condition called partial trisomy of the 17th chromosome.” 

A dedicated team of specialists helps RH live his most fulfilling life 

Over the years, RH’s care has spanned pulmonology, neurology, cardiology, hematology, audiology, rehabilitation medicine and more. Cerebral palsy is a neurological condition that happens in utero. Because children’s brains are so flexible, a lot of his care has been focused on therapy to build his cognitive and gross motor skills.  

He’s also had some of his biggest life milestones at Children’s Health.  

“RH took his first steps at the hospital. It was a victory for our family and his team. There have been plenty of hard moments, but no matter what he’s faced, Children’s Health has been at our side,” she said.  

RH has multiple weekly visits to Children’s Health for outpatient physical and occupational therapy and has logged dozens of hours in the therapy pool. He also receives specialized speech and swallowing therapy to help strengthen the muscles in his esophagus and vocal cords so he can eat.  

With support from his therapists, RH has learned to communicate with the help of a tablet. And even though he is nonverbal, RH’s sisters almost always know exactly what he wants or needs – and when he’s ready to play or celebrate.  

“Clardy Ruth and Dot expect RH to play with them at the playground and everywhere we go. They know he is different, but they don’t see him as being different,” Jessica said. “When others acknowledge his differences or kids aren’t friendly, they become very protective.”  

A keen neurologist brings RH’s health into full view 

Even as RH gradually met the milestones his therapists and doctors hoped he would, his care team was still perplexed by a few things. But that changed in 2022. 

RH was in the hospital for recurring complex seizures and Saima Kayani, M.D., pediatric neurologist and Assistant Professor at UT Southwestern, was the attending neurologist rounding on RH’s floor that day.  

RH’s family had never met Dr. Kayani, who specializes in medical genetics and studies rare neurological diseases. As she read RH's medical history, she started asking questions – a lot of questions. Eventually, she asked RH's family if she could test RH for a series of genetic conditions.  

Soon, Dr. Kayani diagnosed RH with a rare condition called partial trisomy of the 17th chromosome that can lead to developmental delays.  

“We learned that every cell of his being, the way RH was knit together – from the moment of conception – happened with an extra special bunny ear of chromosome material,” Jessica says. “It’s given us a better direction for his medical care, his needs are more closely related to someone who has Down Syndrome. Now we can see and know RH for who he truly is, which makes me love him even more.”  

More recently, RH has been seeing an ear, nose and throat specialist to help with his severe sleep apnea and treatment could involve a life-changing surgery to implant a device to keep his airway open during sleep.  

For RH’s family, this is another example of the collaborative care found through Children’s Health and UT Southwestern to help a boy who has been a patient for more than a decade. 

“Children’s Health has been integral for RH’s health, and the journey is not finished. His care has relied on so many specialties across the system,” Jessica said. “Here we are – all coming together to figure out how to help a little boy who cannot talk.” 

A family culture of gratitude and giving  

A few years after coming to the hospital for multiple weekly visits, Jessica joined the Women’s Auxiliary. She wanted to help raise awareness and funds for pediatric health care, and she’s enjoyed the connection and compassion of women who want to make life better for children.  

In 2024, RH and his family were recognized as the honorary patient family at Family Night at Six Flags, an annual fundraising event that raises funds for Children’s Medical Center Dallas.  

“Many of the Women’s Auxiliary activities and fundraising events focus on kids. So, my girls strengthen their ties with the hospital, and RH can do things with them that aren’t just about his care,” she said. “Since he loves nothing more than holidays and events, a lot of the activities are great for him and the rest of the family too, like Family Night at Six Flags.”  

Several years ago, Jessica and her late husband Michael, who passed away in 2023, started an endowment named the R.H. Barnett & Family Education Fund for Rehabilitation and Therapy Services to help fund the purchase of sensory equipment and support resources for the Children’s Health rehabilitation outpatient programs.  

“I am so proud that this endowment can help children so directly every day,” she said. “It was a very strategic decision and a great reflection of RH’s love of play and what he’s taught our family about living joyfully.”

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