Immediately after Kimber was born, doctors knew there was something wrong. She slept through everything including baths, blood draws, and shots. This behavior continued for a week before she was sent to another hospital for further testing. After two months she was discharged from the NICU with a g-tube. Because of her low muscle tone and constantly being limp, doctors told Alyssa she wouldn’t live past six months. A couple of weeks later, a genetic test revealed she had Prader-Willi syndrome.
The Joys Outweigh the Challenges of Prader-Willi Syndrome
Alyssa was glad to finally have a diagnosis. They had been trying to accept the fact their daughter wouldn’t live long. So when they found out those with Prader-Willi syndrome typically have an average lifespan, Kimber’s parents were relieved. “We got to have our little girl, so I think that softened the blow of the diagnosis a little bit,” Alyssa said.
Prader-Willi syndrome doesn’t come without its challenges. Kimber works twice as hard to do something that comes so easily for other kids. Her stubbornness and determination serve her well in this aspect. She also has food issues particular to this disorder. She thinks she’s hungry all the time because there is no connection between her brain and her stomach when she is full. Because of this, they lock their fridge and have strict dietary guidelines.
Alyssa and her husband were told a lot of discouraging things when Kimber was born. Doctors believed she would be a burden even after they discovered her diagnosis. “They couldn’t have been more wrong…She’s just such a sweetheart and so much fun, and I can’t imagine our lives without her,” Alyssa said. She is sweet, makes everyone laugh, and is always concerned about the needs of others.
Little Girl has Big Impact on Community and Family
Kimber’s younger brother, Brady, influences her in ways they never would have thought. She wants to be the big sister so badly which means she needs to do everything her little brother can do and do it better. They will be great role models for each other in every stage of life.
Kimber’s impact on her community has been huge. Alyssa and Kimber go to universities and middle schools to talk about disabilities whether it’s Prader-Willi syndrome or others. Parents have come up to Alyssa in public places commending her for her efforts to teach young people about special needs. “In our society, people have a certain image in their minds of what a kid with a disorder is going to look like and act like. Kimber just blows all those stigmas out of the water,” Alyssa said.
Words of Advice: These Kids are Incredible
In the beginning, it was hard being told over and over that Kimber wouldn’t be able to do an array of things. Alyssa, however, pushed Kimber to do those things unless she showed them that she couldn’t. She has her own goals and Alyssa wants to be supportive of Kimber in reaching those goals. Any kid with a disability is just a kid that wants to be loved and included. It is a parent’s job to help them do what they want to do rather than set limitations. “These kids are just incredible; they are so determined and if you don’t limit them, they are not going to limit themselves,” Alyssa said.