Zoelle's Story
Zoelle Leaire Blade was born 3 and half months early on December 26, 2013, weighing 1 pound 6 ounces. Her extreme prematurity was the catalyst for a medically complex and critically severe diagnosis. The most alarming of these conditions occurred when she was 2 weeks old. She acquired necrotizing enterocolitis (NEC); death of tissue in the intestine. The majority of her bowels died. Only 4 centimeters of healthy, viable small intestines remained. Receiving intravenous fluids 24 hours a day was her only option for survival. A central venous line (CVL) was placed in her chest that lead to a large vein connected to her heart. Through it she received total parental nutrition (TPN) for her entire life. A month before her first birthday she was placed on a transplant waitlist to receive a multivisceral transplant to include intestines, liver and pancreas. A stomach and kidneys were added to the list when she was 4 years old.
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While awaiting multi-organ transplant Zoelle, 4 months away from her 5th birthday went to be with the Lord on August 25, 2018. In her short and profound life, she overcame every tumultuous challenge with a supernatural resolve and an unparalleled spirit beyond human understanding. Her joy and sweet laughter were magnanimous. Every person in her presence felt her fortitude and steadfast character. Though Zoelle did not benefit from being a recipient of a multi-organ transplant her spirit lives on through her foundation with each life it will Bless.
Zoelle’s intestinal failure led to short-bowel syndrome which inherently contributes to nutritional malabsorption. This combination fosters very slow, difficult and limited growth. She had just reached 20 pounds at 4 years old. As a result of TPN dependency she developed TPN induced late-stage liver disease. Dozens of procedures, surgeries and innumerable hospital visits saturated Zoelle’s delicate life. A testament to her uncanny perseverance was most whom saw or interacted with Zoelle would typically think the only concern was she had a feeding bag; and appeared younger than her age.
Zoelle super-exceeded all clinical and developmental expectations. She flourished abundantly. She walked independently; playing chase being one of her favorites. She spoke in short phrases. Read books beyond her age level. Counted to 100, counted by 10’s to 100 and from 1-10 in Spanish. Best of all her loving countenance flowed never-ending to others. Etched in the memory of all who had the pleasure to share within her life.
The Zoelle Leaire Foundation