Taelor was born on June 9th, 1990 and was diagnosed with a rare disability known as Prader-Willi Syndrome. Her disability created a lot of daily challenges and barriers for Taelor but she did the very best with the resources given to her by God. Like many special needs kids, she saw and participated in the world in a very different manner. Taelor was very organized, had a wonderful laugh and was a ton of fun.
People who were blessed to meet Taelor will always remember her big heart, her warm personality and her unique vocabulary. She could be shy at times yet was a very social person once she got to know you. She was very matronly and loved to nurture any and every animal in her path. She insisted on regular visits to the zoo and loved to volunteer at the Humane Society several times a week.
She passed away on October 23, 2008 at the age of eighteen. Taelor touched so many lives while she was alive. Taelor’s House Foundation was established in 2005 as a private foundation to give back to the community in support many of Taelor’s favorite charities & community activities. Many friends asked us to make the Foundation a charitable 503c non-profit to expand the influence of the Foundation in the communities that we serve, so that’s what we did! Today your donations to Taelor’s House Foundation are fully tax deductible.
Taelor will live forever in our hearts but we miss her every day. With your help and generosity, the good deeds of her Foundation will be a part of her legacy for decades to come.
Prader-Willi syndrome (PWS) is the most common known genetic cause of life-threatening obesity in children. Although the cause is complex, it results from an abnormality on the 15th chromosome. It occurs in males and females equally and in all races. Prevalence estimates have ranged from 1:8,000 to 1:25,000.
PWS typically causes low muscle tone, short stature if not treated with growth hormone, incomplete sexual development, and a chronic feeling of hunger that, coupled with a metabolism that utilizes drastically fewer calories than normal, can lead to excessive eating and life-threatening obesity. The food compulsion makes constant supervision necessary. Average IQ is 70, but even those with normal IQs almost all have learning issues. Social and motor deficits also exist. At birth the infant typically has low birth weight for gestation, hypotonia (weak muscles), and difficulty sucking due to the hypotonia which can lead to a diagnosis of failure to thrive. The second stage (“thriving too well”), has a typical onset between the ages of two and five, but can be later. The hyperphagia (extreme unsatisfied drive to consume food) lasts throughout their lifetime.
Children with PWS have sweet and loving personalities, but this phase is also characterized by increased appetite, weight control issues, and motor development delays along with some severe behavior problems and unique medical issues. People with Prader-Willi Syndrome require 24×7 supervision, this creates extreme care giving challenges for the families of a child with the syndrome.
For more information on Prader-Willi Syndrome please go to http://www.pwsausa.org/
Taelor Alexas Roenigk was born on June 9, 1990. She passed away on October 23, 2008 at the age of eighteen. Taelor touched so many lives while she was alive. We started Taelor’s House Foundation in 2005 as a private foundation to give back to the community and provide a donation mechanism to support many of Taelor’s favorite charities and community activities.
When Taelor passed away in 2008, many friends of the foundation wanted us to make the foundation a charitable 503c non-profit to expand the influence of the Foundation in the communities that we serve. So that’s what we did! Today your donations to Taelor’s House Foundation are tax deductible.