I am so grateful to have the opportunity to serve as a parent mentor for Akron Children’s Hospital. It has truly been an enjoyable and educational experience for me and much, much more than I had hoped for.
My husband and I have 2 children; a son who is getting ready to turn 20 years old and a daughter, Casey, who is in her teens. Casey was diagnosed at one month old with Prader Willi syndrome (PWS).
When Casey was born she was referred to as a “floppy baby.” She had little to no muscle tone and weighed just under 4 lbs. She did not have enough strength to suck on a bottle, cry or move. Casey spent her 1st month in the NICU at Akron Children’s Hospital where numerous tests were done, to determine her rare condition of PWS.
The syndrome affects 1 in 15,000 births and affects the 15th chromosome. There are 3 different subsections of the syndrome. Casey had what was known as UPD. The primary condition of Prader Willi Syndrome is the child’s initial low birth weight and low muscle tone. As Prader Willi children grow they can develop an insatiable appetite. Their brain does not tell them when they are full.
While in the NICU, Casey was also diagnosed with hypothyroidism (low metabolism), and has been seen regularly at the endocrinologist.
Casey began early intervention services with a physical therapist, occupational therapist, and speech therapist as soon as we got her home from the NICU. An underlying issue with PWS kids, because of the low muscle tone, is scoliosis. She was watched closely by the physical therapist for curvature of the spine and at 6 years old she had expanding rods placed into her back to slow the curvature of her spine as she grew. Casey had two surgeries per year for 6 years to adjust the expanding rods to grow with her and stabilize her spine. Casey had a final spinal fusion at 12 years old to reach her maximum height.
She has also seen a neurologist for seizure activity that was detected in her brain, although she has never actually had a seizure, and she has seen a developmental specialist for behavioral issues.
Casey attends her local school district. She continues to receive PT, OT, speech and special education. She is very active as a Girl Scout, in Dance Unlimited, and Girl Talk. She also loves to fish with her dad and loves her black lab, Blue.
Robin is a parent mentor for these conditions: Hypothyroidism, Prader-Willi syndrome, Scoliosis.
Robin is a mentor for these care services: Developmental Delay, Endocrine, Genetic Syndromes, Neurology, Orthopedics, Seizures, Surgery
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