Articles and Updates from Phoenix Children's
Like many children with Down syndrome, Kinsley Benick has been a frequent visitor to Phoenix Children’s. Just 2 years old, Kinsley (pictured below) has already had two major surgeries, several minor surgeries, multiple ER visits and numerous tests and procedures for kidney and bladder problems linked to the disorder.
It’s a lot to deal with – especially for a child with communication challenges related to her Down syndrome diagnosis. Kinsley’s mom, Shekinah, is grateful for the attentive and compassionate care her daughter receives at Phoenix Children’s.
“The people there are just extraordinarily helpful and kind, and so sweet to Kinsley,” she says. “It’s hard because she can’t understand what’s happening, and because of her developmental issues, she can’t speak for herself. But they’re very careful to pay attention to what she’s saying through her emotions.”
On March 21, World Down Syndrome Day, the world celebrates all individuals with Down syndrome. The date acknowledges Trisomy 21, the triplication of the 21st chromosome, which causes Down syndrome. Trisomy 21 is the most common chromosomal condition diagnosed in the United States, affecting approximately 6,000 babies every year.
“At Barrow Neurological Institute at Phoenix Children’s, we celebrate our children and families living with Down syndrome every day of the year,” says developmental pediatrics specialist Dannah Raz, MD. “We are passionate about helping them live their lives to the fullest in every way.”
Caring for these children requires comprehensive medical expertise and a compassionate, holistic approach. In addition to being at risk for developmental issues such as cognitive disabilities, global developmental delay and attention-deficit/hyperactivity disorder, our young patients have an increased risk of heart conditions, hearing and vision problems, thyroid disease, gastrointestinal issues and more.
As the only Down syndrome clinic in Phoenix dedicated to supporting children and families, our pediatric Down Syndrome Clinic provides multidisciplinary care by a team of specialists that works with each child’s primary care provider and other specialists to help address every medical concern. Led by a developmental pediatrician together with a nurse practitioner, the clinic’s team includes an occupational therapist, a physical therapist, a speech therapist and a feeding therapist. Our medical providers follow American Academy of Pediatrics guidelines to ensure our patients receive the best possible medical care.
“The staff, therapists and doctors at the Down Syndrome Clinic were kind, helpful and welcoming,” says Shekinah Benick. “My sometimes-shy toddler was instantly at ease and happy to show off her growing skills as they immersed themselves in her world so they could learn how to best help her. She walked confidently down the hall as they all cheered for her and she just beamed. I was thankful for their input and encouragement.”
Between appointments, families have the support of a clinic coordinator, as well as resources to help support their child’s educational plan, community involvement and social skills.
“Every child we care for is unique and wonderful,” says Dr. Raz. “We are grateful to partner with families and the community to provide the care, support, and recognition each individual with Down syndrome deserves.”
Phoenix Children’s Down Syndrome Clinic is pleased to be a sponsor of the World Down Syndrome Day 2022 celebration on Saturday, March 19 from 10 am to 12:30 pm at Rio Vista Community Park in Peoria. We invite you to join us in honoring these amazing and inspiring individuals.