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A glimpse into Kaylee’s Life with Prader-Willi Syndrome

March 23, 2012

Monique and her husband Brian “Griff” Griffin had a lot to look forward to in the New Year. As 2008 was drawing to a close, the couple eagerly anticipated the arrival of their first child, a daughter, in the coming weeks. They were an equal mix of excitement and nervousness, looking forward to the joys of parenthood and anxious for all of the unexpected thrills that were headed their way. But when Monique went into labor five weeks early on December 28, she and Griff could not have predicted just how much their lives would change in the coming year.

Kaylee Griffin was born on December 30, 2008 at Winnie Palmer Hospital for Women & Babies. “She didn’t cry when she was born,” Monique recalls. “They let me give her a quick kiss and then they whisked her off. I didn’t know what was going on, but there was a feeling in the room that something was wrong. Honestly, other than that, I don’t remember much about that moment.” Kaylee had been rushed to the Neonatal Intensive Care Unit (NICU) for testing and an eventual diagnosis. At that moment, all Monique and her husband could do was wait.

The next day, New Year’s Eve, Kaylee’s neonatologist called Monique’s room with grim news. There was still no diagnosis, but it appeared that Kaylee had mental and physical problems that would leave her severely disabled. Monique and her husband felt more hopeless than ever. “I remember looking out of my hospital window and seeing the New Year’s fireworks at the Citrus Bowl,” says Monique, choking up at the memory. “At that moment, I thought to myself, ‘My life is never going to be the same again.’”

After a few days, Monique was discharged, leaving the hospital without her newborn. She and her husband visited Kaylee regularly, hoping every day for a diagnosis. During their visits, Kaylee never opened her eyes. A night nurse in Kaylee’s unit kept a camera with her at all times, snapping photos of Kaylee with her eyes open, so her parents could see. It was not until February 3 that Monique and Griff finally had a diagnosis: their daughter had Prader-Willi syndrome, a congenital disease that causes decreased muscle tone, decreased mental capacity and an insatiable appetite that often results in obesity. There is typically no family history of the disease.

When it came time to finally bring their daughter home, Monique and Griff were overwhelmed and scared. They were provided stacks of information from their Winnie Palmer Hospital social worker, including a brochure for Early Steps, Florida’s early intervention system for children under the age of three. Monique quickly set up an appointment for an evaluation through Early Steps and began contacting other families in the area affected by Prader-Willi syndrome. She and her husband were determined to learn as much as they could about the disease and to find Kaylee the support she needed to live her life to the fullest.

Kaylee received her evaluation at the Developmental Center for Infants & Children/Early Steps, a program of the Howard Phillips Center for Children & Families, part of Arnold Palmer Hospital for Children. She qualified for services and soon began receiving physical and speech therapy at home in her natural environment. Monique noticed differences in her daughter’s development right away.

“She didn’t hold her head up on her own until she was seven months old,” Monique recalls. “I used to cry during each physical therapy session because Kaylee improved every single time. I remember seeing her take her first steps at 19 months. It was incredible. Her therapist found out she liked bubbles, so she blew them for her, and that’s when Kaylee took her first step.”

Kaylee began making sound at about six months; a sound that Monique describes as “music to her ears.” Each improvement Kaylee made, no matter how small, felt like a tremendous accomplishment to her parents, who did not know if their daughter would ever walk or talk. Now, at age two, Kaylee talks regularly, although she still struggles to form sentences. “She has absolutely exceeded everything we thought would happen. Kaylee’s outlook was so gray and awful, but early intervention therapy has been the proverbial light at the end of the tunnel for us,” says Monique.

During early childhood, most individuals with Prader-Willi syndrome will exhibit an insatiable appetite, causing them to eat constantly and eventually suffer from obesity. Monique is aware of this possibility and carefully monitors Kaylee’s food intake. She and her husband are prepared for the worst, but have more hope now for Kaylee’s future than they ever did before. Monique credits Kaylee’s incredible progress to the early intervention services she received from the Developmental Center.

“Because of the Developmental Center, Kaylee is catching up on her milestones,” says Monique. “She is still delayed, but we continue to see improvements. Her therapists are so pleased with her progress and we, as parents, are thrilled to see her striving toward her goals. The Developmental Center helped us focus and prioritize and, most importantly, helped us find other avenues of assistance. They gave us the tools we needed to help our daughter in the fastest and best way possible.”

Kaylee has been discharged from in-home physical therapy. She still has balance issues, but is walking on her own and loves going to the playground. A very active toddler, she is even taking swimming lessons and has now started going to school. Without early intervention therapy, Kaylee may have never reached the developmental milestones that she has now surpassed.

Monique and Griff continue to be their daughter’s biggest supporters and look to the future with optimism, knowing Kaylee received the vital head start she needed in order to thrive throughout her life.