Need for care homes for Prader-Willi-Syndrome adults
Diseases
Endocrine Disease, Genetic Disease, Rare Disease
Issues and Challenges
Michelle has encountered: Access to Expert Providers, Access to Medicine, Copay Issues, Insurance Issues, Medicare / Medicaid Issues, Caregiving, Housing, Prior Authorization, Underserved Community
My Story
My daughter Leslie was born 27 years ago and was diagnosed at 3 weeks of age with Prader-Willi syndrome (PWS). Prader-Willi syndrome is a rare genetic disorder that causes low muscle tone, failure to thrive, cognitive delays and affects the hypothalamus, which causes them to constantly feel hungry and seek opportunities to obtain food. Most babies need to be fed using a feeding tube, but she was able to eat with a bottle after consistent effort. She spent years in Physical, occupational and speech therapies, hippo therapy and social skills classes. To ensure her safety and prevent food theft and overeating, which can lead to a stomach rupture due to an inability to feel satiated, we lock our refrigerator, freezer, and pantry.
We started Leslie in a private school with a one on one so that she could stay mainstreamed and graduate with a regular diploma, which she did. Since high school, however, she has not been able to find a job that will allow a one on one to be with her due to the extreme food seeking or a job that does not involve food at some level. She has stolen people’s lunches and food from places if not supervised.
In her late teens, Leslie began displaying behaviors such as running away by climbing a 6-foot gate, jumping out of vehicles, calling the police, stealing our cars, and leaving from places like her horse barn. We took her to a psychiatrist and started her on psychotropic medications. Over the years, with a lot of guidance, she has learned to calm herself and not have violent outbursts. She is a kind and compassionate young woman; however, due to her syndrome, she will require continuous 24-hour care and cannot live independently. Her goal is to live independently or with people who have the same syndrome as she does.
Leslie currently resides with her father and me, along with a professional care provider whom we employ to assist with her needs. We are concerned that there are very few Prader-Willi specific homes, and those that exist have long wait lists. The transition/continuum of funding from state to state for residential care is essential and my hope would be to see this go to a federal level rather than handled only at the state level. People with Prader-Willi syndrome are living much longer than in the past and her father and I need to make sure she will be taken care of when we are gone.
I will continue to advocate and share my story in Washington, DC so that we can continue to improve our health system for people with rare diseases.
My Motivation and Inspiration
When my daughter was born almost 28 years ago with Prader Willi syndrome I was clueless on what to do and where to turn. I met a mom who was the president of the Florida chapter at the time and she told me "don't worry, you will be president of the organization one day." I laughed and said no way but she ended up being right. She got me through a very difficult period and I ended up meeting another "family" of people who's children had the same syndrome. I learned very quickly that most of these families did not have the support I did, nor did they have the finances or time it took to get the best services for their children. That is what drew me to fundraise and become an advocate so that these families could benefit and have the help they desperately need.
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