Johnnie L.

"We call her Johnnie Blue, or just Blue."   

 "Johnnie has an extremely rare disorder called Prader-Willi Syndrome. It has a seemingly endless list of opposing characteristics, but the hallmarks are hypotonia and the way that she experiences hunger. As an infant she was "floppy" and did not experience hunger. She had her G tube placed at 3 weeks old, just after we received her diagnosis. PWS changes over time, and she is moving into hyperphagia, an extreme, insatiable hunger. She will never be able to feel a sense of fullness, and will always feel hungry."

"Johnnie has a great sense of empathy and care for others. Even in the NICU, before she could even move, she would squeeze my fingers, and it was the most comforting gesture. Letting me know she was there even though she was never awake, trusting me with her care, and it just felt like she was saying I Love You. She gives the best hugs in the family, going places with her is like going somewhere with the Prom Queen the way she likes to wave and smile at everyone. And even people like nurses and phlebotomists who have to do things to her that hurt, she will tell them thank you and give them a hug and kiss afterwards. And ask them for a kiss on her cheek!"

"The Prader-Willi Syndrome Association provides endless support and information to individuals with Prader-Willi Syndrome, their families and caregivers. They provide new families with Parent Mentors, medical handbooks, and a one year free membership. They work tirelessly to fundraise and contribute to new research. Our family receives newsletters and offers to be a part of research, and we are constantly referring to them for medical information and advice."

Donate: https://www.pwsausa.org/

 

"She was one of the rare ones,
so effortlessly herself,
and the world loved her for it."