May is Prader-Willi Syndrome Awareness Month! Diane Sheeran has been with Support Inc for over a decade and living with her current Host Home Provider (HHP) for over 5 years. Dianne has a diagnosis of Prader-Willi Syndrome, and her Siblings would like to share a positive story and resources for anyone with or supporting a loved one with this diagnosis.
Prader-Willi Syndrome Association USA – Supporting Families
https://www.pwsausa.org/
PWSA | USA’s Residential Providers Conference – Prader-Willi Syndrome Association | USA. This is info on a Residential Providers Conference Aug 18-Aug 20 In-person and Virtual
https://www.pwsausa.org/event/pwsa-usas-residential-providers-conference/
“A positive story is Diane’s success with Support Inc, RPC Richard Shaw and HHP. Richard was with us before our mom passed. Mom pretty much overruled many suggestions and only allowed certain things to happen. Diane could go very few places in public, yet alone to a grocery store or restaurant. Diane only lasted a few months with the first HHP. It was her first time as an HHP so had no experience with anyone, yet alone a person with a diagnosis of Prader-Willi and definitely not Diane! When her HHP was first introduced to her, Di was coming out of the hospital, weighed over 285 lbs, diabetic, diagnosed with congestive heart failure and was given 6 months to live if there were not drastic changes. HHP had a plan, said it will take time, but she needed the family support, so we gave her our 100% support. Now admittedly at times there were questions and concerns, I’m sure HHP had them too, haha, but the results became apparent quickly. Diane is in the best health she has ever been because of her current HHP”.
-Tim Sheeran
“Richard has been with us for so long, he is like part of the family! He knows the family, our quirks and uniqueness. I remember the time Diane was in a play sponsored by Support Inc. and Richard and I just stood there sobbing as Diane actually participated and was so proud of herself. He’s been with us and helped us navigate the death of our mother and again at the death of our brother from COVID.
I can’t express enough gratitude to the HHP for opening her home to accept Diane. We fondly call her Saint HHP. There was more than one time I was sure we would be hunting for a new provider, but HHP would come back and say she and the boys discussed it and they wanted Diane to come back to their home. Prader- Willi Syndrome is very difficult as it changes the life and patterns of everyone living with the person. HHP and her family had to make drastic changes to help Diane. The current HHP has learned how to control Diane’s food and behavior issues but still let’s Diane be Diane! I am so grateful to Matt for being adamant that we enrolled Diane into Support Inc services when we did. There is not a cure for PWS but thanks to the HHP and Support, Inc Diane does have a quality life.”
-Linda Sheeran
