Kathy Dzembo felt hopeless with her great-nephew’s rare disease so she did what she does best: bake.
Connor’s scary diagnosis was that of a neurodegenerative disorder called ataxia-telangiectasia, an autosomal recessive disease that results in severe disability. Hallmarks of the disease are small dilated blood vessels and poor coordination. Only 500-600 children nationwide are diagnosed with A-T, which results in loss of muscle control, immune system issues and a risk of cancer. To learn more about this rare disease, click here.
Connor’s parents, Nick and Samantha, and Kathy united to bring about a foundation to raise money for research and support. Last holiday season, Kathy wondered how she would contribute and decided on harnessing her baking talents. She never expected she would raise over $3,000. This year, back, doing it again.
Connor was diagnosed with the disease right before his third birthday, back in 2009. Connor, who was an active little athlete, had to quit karate and soccer. A local gym coach, however, still helps Connor get his active fix with indoor rock climbing.
Nick and Samantha went through the same pattern that many rare disease parents go through. First, they faced the diagnosis, then the pain of learning there was no cure, and finally, the call to action. They were heavily inspired by another Florida family, the Marguses, who had created the A-T Children’s Project, a nonprofit aimed at raising money for the disease.
Connor’s family named their foundation Wobbly Feet, and it’s been an epic accomplishment of fundraising. After annual golf tournaments, a pasta bar with live entertainment, an online auction and Kathy’s delicious baked goods, they are expected to raise over $80,000 this year.
Kathy sold platters of holiday confections made out of chocolate, butter and nut for $20 a piece in which all proceeds went to Wobbly Feet. Working long days and nights, Kathy baked over 150 orders which was three times as much as she expected. They even packaged their desert platters with ribbons and personalized thank you notes.
Because of the high demand, they decided to bump their desert prices up to $25.
“To me, it’s not a business,” she told the Times Union “That’s my donation.”
Read more about this story in Times Union.