For years, Maddie’s family struggled to find the right combination of medications and therapies to treat her Pitt-Hopkins Syndrome, a rare genetic disorder characterized by intellectual disability. Co-occurring behavioral challenges — such as autism, ADHD, epilepsy, and disruptive mood dysregulation — made it difficult for her to live comfortably with her family. Maddie needed comprehensive medical and behavioral care, but her home state of Louisiana did not have a facility that could meet all her needs.
Then her mother received a referral to Nexus Children’s Hospital in Houston, Texas.
“On the first day we got there, I was nervous to leave her,” said Maddie’s mother, Tabitha Desormeaux. “But Maddie was comfortable as soon as she walked in, and that’s very rare. The staff was so accommodating, so ready to get to know her and work with us. They understood our desperation.”
During her three-month stay at Nexus, Maddie’s medications were adjusted. She engaged in a daily routine of therapies that helped her develop healthy ways of communicating and regulating her behaviors. The familiarity of routine allowed Maddie to feel comfortable, secure and capable of growth.
“Maddie demonstrated considerable gains during her time with Nexus,” said Heather Maguire, Autism Specialist Program Manager at Nexus Children’s Hospital. “She was able to utilize skills learned while attending programming to advocate for her wants and needs in a functional and appropriate way. It was impressive to witness her confidence in her ability to interact with others grow.”
Indeed, Maddie flourished in play therapy, forming close friendships with patient peers.
“I remember visiting one day and discovering that Maddie had friends her age,” Tabitha recalled. “That was the first time I’d ever seen people engage with her. She felt accepted and loved for the first time.”
Equipped with the skills she acquired at Nexus, Maddie now lives in her own space — affectionately dubbed “Maddie’s House” — near her family in Louisiana. A rotating, 24/7 care staff replicates the routine she enjoyed at Nexus, allowing her to achieve the highest level of independence possible while remaining close to her loved ones.
As a result of her experiences with various care providers, Tabitha has become a committed advocate for young adults with special needs. She wants more families to be able to access the type of life-changing care Maddie received at Nexus.
“I knew in my heart I wanted to find a place where she would be safe and loved,” said Tabitha. “When we went to Nexus Children’s Hospital, we always felt good leaving. We knew she was in a good place and getting better every day.”
