My Friend Adelaide – Living with Prader-Willi Syndrome

Adelaide is such a beautiful little girl.

Her mother, Penni and I met a few years back at the fitness facility located in the building where we both work. We don’t talk most days because she is usually running while I am a walker but just recently I saw a sign hanging in the ladies locker room, advertising a walk for Adelaide and One Small Step for Prader-Willi Syndrome. I had no idea what PWS was or that Penni’s daughter, Adelaide was living with it so I interrupted Penni’s workout to see if Kerri Chronicles and the Coffee & Christ Show could get involved to help raise awareness.  :O)

Penni shared with us Adelaide’s story and how babies are born with PWS are very floppy, they have very low muscle tone and they’re too weak to suck,whether breastfeeding or taking a bottle so they don’t eat.

In Adelaide’s case, at just 3 days old she was moved to the NICU because she wasn’t eating and the neonatologist in the NICU suspected it was PWS and sent her off for a blood test. Ten days later it was confirmed and Adelaide’s treatment began.

The diagnoses itself was a blessing because not only did they now know what was wrong with Adelaide and could start treating her but it was a blessing that it was diagnosed so early. Early detection means a world of difference for those that suffer.

Watch Adelaide’s short video above to meet my adorable little friend and learn more about her life.

To learn more about Prader-Willi Syndrome or donate to the cause, visit One Small Step.