Lily Beauprés last days: “We made every minute count’

The development of NP-A causes a number of life threatening symptoms including feeding difficulties, abdominal swelling and an enlarged liver, among other ailments that deteriorate the quality of the affected child’s life.The life expectancy for a child diagnosed with NP-A is typically between 3 to 4 years old. This genetically transferrable disease is caused by the lack of an enzyme called sphingomyelinase, which is needed to break down a fatty substance called sphingomyelin. Without the enzyme, fact accumulates in the liver, spleen, lymph nodes and brain, shutting those organs down and resulting in death. There is still no known cure. Lily’s parents, Eliza Iozza and Yvan Beaupré, share their experiences as first time parents to a child with this debilitating disease. Lily was diagnosed with NP-A at 6 months old. For her parents, accepting the illness was incredibly difficult, however by becoming better informed and using social media websites to contact others who have, or are still facing the same obstacles eased the coping process. Learn more about Lily’s story by following this link

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