Written August 2014
Audrey was diagnosed with Prader-Willi syndrome, a rare genetic disorder that causes low muscle tone, developmental delays and blocks the feeling of fullness from eating. Those with Prader-Willi spend their lives feeling perpetually hungry, and require lifelong care and monitoring to avoid eating themselves to death.
In January 2013, Audrey found her forever family with Amy and Toen Starkweather, and brother Ethan, who also has Prader-Willi.
“I cannot imagine our lives without Audrey,” says Amy. “This little girl has just melted all of us — there are struggles but they are dwarfed by the joy.”
Adoption was something that Amy and Toen had always considered. But they were busy raising their three biological sons, Jared, now 20, Ryan, 18, and Ethan, now 14. After Ethan’s diagnosis, their lives changed dramatically. They put everything on hold to learn as much as they could about this rare condition and to adjust their lives to meet Ethan’s needs.
“Unless you are in this life, our house might seem crazy,” Amy says. “We have a pantry where all the food is kept, including the refrigerator, and it is locked at all times. Everything to do with food and mealtimes has to be very structured and routine, because Ethan would eat until he was sick if he could.”
Little did they know, all of this trial-and-error learning would prepare them for the family’s next life-changing event.
STARTING THE PROCESS
“Through the grapevine, we learned The Cradle was looking for a family for a baby girl born with Prader-Willi,” says Amy. “Toen and I had talked about adopting, we had the room, our hearts were ready, and so we decided to inquire about Audrey.”
While the family didn’t have their adoption paperwork ready, they had a couple of big “pluses” in their favor. One was their experience parenting Ethan. “We knew what we were in for,” Amy says. “We were past all of the uncertainty and the ‘what ifs’ — we knew we could do it.”
The other plus was a result of their involvement with the reality TV show Extreme Home Makeover, in which the family received a new, custom-built home that included a huge kitchen with locking pantries.
“We had this amazing house that was designed for a child with this condition,” Amy says. “The minute I saw Audrey’s photos, I looked at my husband and said, ‘That’s our daughter.’”
After learning they had been chosen as Audrey’s parents, the couple made the 11-hour drive from Tulsa, and had Audrey in their arms on January 10, 2013. She was almost six months old and had been living in the care of a Cradle foster family.
“I remember feeling this sense of relief, and joy, and overwhelming love,” Amy recalls. “I was so nervous at first — I was meeting my daughter — but it was great. Watching my husband and the boys was amazing — they all bonded with her so quickly.”
DEVOTION AND PROGRESS
The Starkweathers were soon back home in Tulsa, ready to begin life as a family of six. As she did with Ethan, Amy worked with Audrey to help her reach her potential. At 22 months, Audrey is already walking (due to their low muscle tone, many kids with Prader-Willi don’t walk until they are 4 or older), babbling, reaching for things and progressing beautifully. Amy is assisted by a team of therapists, the family’s service dog, Cotton, and her chief helper, Ethan.
“Ethan is Audrey’s constant companion, and she wants to do everything he does,” Amy says. “He talks to her, all the time: ‘I’ll help you, Audrey. I’ll explain things to you.’ He knows what she is going through, and he wants to be there for her. Their bond is unbelievable.”