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On the evening of Friday, May 29th, 2015, Adelyn Mae Rinaldi (7 lb. 3 oz. 19.5") was welcomed at St. Francis Hospital in Hartford, CT, by her loving parents, Joe & Jennie, big sister, Kaelina and big brother, Anthony. 

Shortly following birth, Adelyn was quickly admitted to the NICU for evaluation and monitoring. After much testing and analysis, early consensus is that Adelyn was born with a rare, genetic condition, Hypophosphatasia (HPP), described as:

"A genetic, chronic and progressive ultra-rare metabolic disease characterized by defective bone mineralization that can lead to destruction and deformity of bones, profound muscle weakness, seizures, respiratory failure and premature death."

So rare is HPP, doctors say that Adelyn may be only one of a handful of infants worldwide that are currently known to have this condition.

Hope comes by way of an experimental treatment from Alexion, a global biopharmaceutical company focused on delivering life-transforming therapies for patients with rare, life-threatening diseases. Initial stages of the program are conducted at Children's Hospital in Pittsburgh. Joe and Jennie are learning more each day about the program and hope to share latest news as things progress.

Adelyn's Army

Adelyn and family face a challenging road ahead, much of which is unknown and constantly changing. They will need all the love and support they can get. And with that, Adelyn's Army was born.

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