At 5-years-old, Conner cannot yet walk or speak. Still, he's working on it every day with the help of his friends at The Warren Center, a Richardson-based nonprofit that empowers kids with developmental delays and disabilities. Therapy services provided by The Warren Center are helping Conner learn how to stand and communicate. He recently completed intensive suit therapy sessions at The Warren Center to help him walk.
Conner was born with the umbilical cord wrapped around his neck, not making any sounds. The nurses worked to get him to breathe and then rushed him to the newborn intensive care unit (NICU). It was more than 30 hours later when Conner's mom Angela held him for the first time. He spent those first 16 days of his life in the NICU, where he struggled with feeding and growing, and as a result, he received his first feeding tube. Despite being born full-term, the hospital staff said Conner was "acting like a preemie baby." Even after he was discharged from the NICU, the hospital stays did not end there.
It has been a long journey with several challenges along the way for Conner. Today he cannot talk or walk yet and is on continuous feeds with a feeding tube. However, Conner has a team of therapists at The Warren Center working with him to help him reach his full potential.
Conner initially received in-home therapy services through the Early Childhood Intervention (ECI) program. In the beginning, he did not have motor skills, and he could not sit, hold his head up or grasp items. With the help of therapists at The Warren Center and the education and coaching that Conner's family received, he was able to sit when he was two. He was fitted for glasses that allowed him to see more of his surroundings and touch items after his therapists recommended a vision evaluation. Both Conner and his family developed a close relationship with his therapists. He transitioned to Clinic Therapy Services after he graduated from the ECI program at three years old.
"Early Childhood Intervention was amazing just because the therapists were there, and they were with us. So, then that made the transition to Clinic Therapy Services so much easier and is one of the big components of why we came here rather than going somewhere else," Angela said.
Conner is continuing to work on his fine and gross motor skills and feeding and speech in Clinic Therapy Services. He is trying communication devices and new textures and flavors of foods. He is also standing longer now with less support and learning how to manipulate objects with his fingers.
"With help from his occupational therapist Jenna, Conner is now able to scoot on his rear using his arms and legs from one room to another. He is also practicing pull to stand position," Angela said.
In addition to therapy services, Conner's therapists provide his parents with resources and tips to help with his development. They regularly work with his parents to ensure that he has the equipment needed to help with mobility, including orthotics, which provide more stability during standing and walking activities, and a medical stroller, which offers positioning and support. Conner's therapists have also provided his family with suggestions for toys that help with his development and a routine chart they created to help him establish a bedtime routine.
Although Conner is making significant progress with the therapy services and support, he receives at The Warren Center, doctors still do not have a diagnosis. Conner has been a part of the Undiagnosed Diseases Network (UDN) – "a research study to improve the level of diagnosis of rare and undiagnosed conditions," according to the National Institutes of Health. The UDN is currently reanalyzing his exome sequence data to try to find a diagnosis for Conner.
The Warren Center relies on the support of donations from the community to help children like Conner. At The Warren Center, every donation of $25 helps provide an hour of therapy, and the nonprofit is hoping to raise 2,000 hours of therapy to help more children like Conner. Donors can choose to give to kids on North Texas Giving Day held on September 23, 2021, here: https://www.northtexasgivingday.org/thewarrencenter.