In honor of the 2nd anniversary of Evie’s bone marrow transplant on March 10th, our family is donating $25,000 via The Evie Fund at Children's Wisconsin to support Dr. Julie-An Talano's transplant research.
We are seeking to raise an additional $25,000+ from friends, family, and anyone who wants to fight back against childhood cancer. All donations are tax deductible, and will go directly towards continuing the research that saved Evie's life.
Evie's Story
At 7:45pm on November 18th, 2021, we were told that our 6 week old daughter Evelyn had Leukemia.
Soon after Evie was born, she started to develop bruises all over her body. At her one month well-baby visit, her doctor recommended we see a dermatologist just to be safe.
As we learned, the bruises were actually what is called leukemia cutis - blood cancer that was causing lesions under her skin. That night, we sat there holding her tiny body, staring at the disease that was trying to kill her. How could this happen?
Time stopped for our family after the diagnosis. Somehow, we continued on, our bodies living and moving through each of those initial days as though in a trance, thinking about how odd it was to have to do “normal” things like changing diapers when our baby was unlikely to make it to her first birthday. The feeling was utter hopelessness.
But Evie did make it to her first birthday. And her second. And she didn’t just make it - she lives life with a sweetness and intensity that brings smiles and joy to everyone around her.
Evie made it thanks to the efforts of Dr. Julie-An Talano and the unbelievable team of doctors, nurses, researchers, and supporting staff at Children’s Wisconsin.
Recent advancements in the evaluation and treatment of infant leukemia, including numerous contributions by Dr. Talano, are why Evie is alive today. Initial genetic testing quickly confirmed that Evie had a sub-type of leukemia called acute myeloid leukemia (AML) that was caused by a chromosomal genetic mutation, KMT2A.
Research showed that less than half of children with this genetic mutation survived on standard chemotherapy protocols. Thanks to advances made in the last 8-10 years, we knew that Evie was headed for bone marrow transplant, where her chances of two-year survival jumped to over 70%.
While the survival rate increases with a bone marrow transplant, they also rely on finding suitable donors - typically a sibling or one of the 40 million donors in the NMDP global donor registry.
In one of the lowest moments of our lives, we learned that Evie did not have a suitable genetic match for transplant from either of these routes. Once again, thanks to protocols and techniques established within the last decade, and championed by Dr. Talano, we were able to proceed with a stem cell transplant using Kim (mom) as Evie's donor.
Evie's transplant was a success. In total, we endured 5 months of inpatient treatment, 6 months of intense outpatient treatment, and a host of bumps and scares along the way. The last two years have been both a dream and a nightmare. We are not out of the woods, but we are extremely fortunate, and we've learned to cherish every moment we've been given.
10 years ago, Evie would've had almost no chance of survival without a donor match. Now, her odds are high and climbing every day she remains cancer free.
What can we accomplish if we help fund the next 10 years of research?
Thank you all, and Go Evie Go!
-Paul and Kim
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