Meet our advocate, Kayla Day, mom to Luella, age 4 with PWS.
Contributed by Kayla Day
After having my daughter and receiving a late diagnosis of Prader-Willi syndrome, it took years before I could discuss it with others. In these 4 1/2 years, I have met amazing families and staff through PWSA | USA. The love and support they gave our family was overwhelming.
Dealing with physicians and local hospitals lacking knowledge about her condition made things much more difficult when we were starting out. In the last two years, I have been doing my best to advocate for Luella and the PWS community. It is crucial to educate the public and the medical field about such a rare, complex disease to ensure proper care.
Recently, I have been working on the steps to have PWS recognized as a developmental disability in Pennsylvania. In early January, I met with Senator Pat Stefano to find out my next steps in this process. We discussed Prader-Willi syndrome in great detail and the struggles that we, as a community, face daily to receive proper resources for our loved ones with PWS.
“It was great to meet with Kayla and learn more about Prader-Willi Syndrome. I look forward to finding ways to further advocate for those affected by the disease, ensuring that their needs are met and that others will be educated about this disease, especially those in the medical field,” said Senator Pat Stefano.
Senator Stefano was very helpful in giving me the proper information and contacts to continue my advocacy mission. It is crucial for me to continue pushing these topics where it matters. True advocacy and knowledge of PWS would not only change my daughter’s life but also advance the importance of treatment options in the near future. These treatments could save lives, and I will do everything in my power to continue making a difference in our state to get us there faster. I am truly grateful for this opportunity to make a difference in Pennsylvania. PWS is rare, but hope is not.