Meet Paige: 2020 Family Advocacy Week Champion

Paige is participating in Speak Now for Kids Family Advocacy Week from August 10-14, 2020. Through this special event, Paige and her family will share information about her health journey, and her treatment at four Iowa children’s hospitals: Blank Children’s Hospital, ChildServe, MercyOne Children’s Hospital – Des Moines and University of Iowa Stead Family Children’s Hospital. The hospitals work in unison to provide Paige with the necessary health care services.

After Paige was born, she spent her first 45 days in the MercyOne NICU. Doctors performed several surgeries trying to stabilize and fix the structural problems her body faced from a cleft lip and palate. She also required surgeries to secure a feeding tube, fix a tethered spinal cord, and repair her hip dysplasia.

“We knew from a 20-week ultrasound that Paige would have a cleft lip, probable cleft palate and a heart defect,” says Amy, Paige’s mother. “We consulted the Perinatal Center of Iowa with the ultrasound results, and they suggested genetic testing as there was concern Paige may have chromosome issues as well.”

When Paige turned 2, she was diagnosed with Kabuki Syndrome—a rare, multisystem genetic disorder associated with facial and skeletal symptoms such as cleft lip and palate. Symptoms also include decreased muscle tone, loose joints and ligaments, motor delays, speech and language delays, and frequent ear infections.

“The path from prenatal testing to diagnosis of Kabuki Syndrome at age 2 was a long road for the entire family,” says Amy. “It was good to finally have an answer after the years of X-rays, MRIs, swallow studies, ultrasounds, and countless other tests and procedures.

Since her diagnosis, Paige has gone on to have several more surgeries on her ears and throat and currently sees speech, occupational and physical therapists. She wears a hearing aid and will be fitted for glasses soon.

“We would be at a complete loss without the care we have received from Paige’s many specialists and the wonderful staff that has helped care for her,” says Amy. “We feel fortunate that we live in an area where we can find the help we need to care for Paige. Her providers have done a great job of treating Paige like ‘Paige’ and not just a diagnosis.”

Today, Paige is a happy 7-year-old who loves school. In the classroom, she uses a communication device with the added benefit of one-on-one assistance. Paige enjoys playing pretend school, dress up and has become an exceptional bowler on the Nintendo Wii during quarantine. She likes Face Timing her grandparents and relatives.


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