Families often find themselves wondering what life could possibly look like for their loved one with Prader-Willi syndrome (PWS). There is usually little clarity upon having a new diagnosis and sometimes that can be intimidating for new families. Now imagine having a newborn with PWS in an era before PWS even had a name!
Ann Sharpan is the mother to a 52-year-old with PWS, Theresa Sharpan.
Theresa is a PWS superstar! She currently lives away from Ann in her own apartment with the help of her caregiver, Maria. She has lived with Maria and her Chihuahua for 14 years and lived in supported living for 7 years. Theresa is part of a day program where she learns about art, hygiene, and various other topics throughout the day. When she isn’t at her day program, she participates in a collection of fun and interesting activities. Just to name a few: Theresa is a black belt in karate, she has different placement medals in various Special Olympics events such as bowling, softball and track, she rides her tricycle in the 4th of July parade every year, and on top of all of that – she raises funds for the Walking for PWS Northern California events every year! This year she collected a total of $960 for the organization and we could not be more grateful.
As amazing as things have turned out for Theresa, it could not go without saying that her mother, Ann has done an exceptional job to ensure that everything goes smoothly.
When asked about her feelings to Theresa moving out at the age of 20, Ann said “I was proud to see her move out. Theresa has always wanted to do things on her own and we never gave up on the journey to accomplishing that.” The reality of the situation was that there was no roadmap to follow, everything that came to fruition for the Sharpan family was a product of trial and error. Theresa was born in 1971 and Prader-Willi syndrome was incredibly uncommon and often unrecognized by doctors. Ann mentioned that doctors would tell her that they would likely never see a baby like Theresa again in their career. We asked Ann if she had the chance to go back and change anything about their journey, would she, and what would it be? She said she would have liked to know about IHSS earlier on in their lives so that she could have possibly avoided the group home setting. But she has no regrets over the decisions made and is beaming whenever it comes discussing her daughter and her achievements.
Finally, Ann shared one final piece of advice for parents who may be new to the organization or who may have a newly diagnosed child:
Research every possibility.
Don’t cross anything out and find what fits best for you. Ann still researches to this day and as a result creates things like a specialized menu for Theresa with around 50 meals in which Theresa and her caregiver can choose from and cook together.
At the Prader-Willi California Foundation, we always talk about “Fulfilling a Full Life Without Limits” for people with PWS and we are grateful to showcase Ann and Theresa who present a shining example of what that looks like.