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My name is Kenny, and I am Emmy’s grandfather and Sandra’s Dad I am asking for help for my granddaughter, who has been fighting for her life since birth.
Emmy was born with an extremely rare genetic disease involving the YARS1 gene—only 33 known cases in the world—along with another serious genetic condition, ANK2. To our knowledge, Emmy is the only child known to have both conditions, leaving doctors with very few answers and a poor prognosis that includes a shortened life expectancy.
On August 12, Emmy was admitted to our hometown hospital. On October 23, she underwent surgery for a G-tube placement. On October 24, she went into septic shock, and on October 25, she was airlifted in critical condition to Children’s Hospital of Philadelphia (CHOP).
At CHOP, Emmy was placed in an induced coma and critical care. After nine exploratory surgeries, doctors discovered that during the original G-tube surgery, her small intestines had been accidentally cut in three places—something that was never disclosed to our family. Internal sutures had come open and were leaking into her abdomen, causing severe infection. Part of her small intestine had died and had to be removed, and Emmy now has a stoma to allow her body to function.
By the grace of God and the incredible team at CHOP, Emmy survived. She coded twice, endured nine surgeries, and continues to fight—but her battle is not over.
Emmy has been hospitalized continuously since August 12 and remains at CHOP today. She is medically fragile, still facing complications, and is scheduled for thumb amputation on December 20 due to damage caused by sepsis. On December 21, Emmy will be months old but weighs and measures what a full-term newborn should, due to her disease.
We are raising funds to help give Emmy comfort, dignity, and quality of life, and to support our family so we can remain by her side during this long and uncertain journey. Any donation, share, or prayer means more than words can express.
Emmy is our miracle and our fighter. Thank you for standing with her and our family.





