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Rare Disease & Uncharted Territory

Our founder’s daughter, Irina, and her story of resilience is the inspiration for Defying Rare.

Irina was born with urticaria pigmentosa, a form a rare disease called mastocytosis. Unlike many patient experiences, the diagnosis was swift, but the progression was too. Unexplained pain and numerous symptoms lead to further testing. During a hospital stay for her first bone marrow biopsy at the age of 3, Irina was gifted a plush dog at check-in by a generous benefactor. It was a welcome distraction for a three-year-old that didn’t understand why all of this was happening. The procedure led to confirmation that the disease had progressed to systemic mastocytosis. After that day, this cute little plush dog always came along to the numerous appointments and procedures she underwent. Always by her side at the hospital, he was a comfort that she relied on during times of anxiousness. Over two decades later, she still cherishes the gift as a keepsake of her journey and a reminder of her strength.

In the spirit of forwarding the kindness shown to Irina, Defying Rare strives to come alongside and comfort children going through similar experiences. Our wish is for children with a rare disease or other pediatric disorder to receive a Golden Gift, which includes a "therapy dog" in the form of Beans, the plush Golden Retriever, and the accompanying storybook that addresses the worries they may face as they navigate their own journey. 


Learn more about our work to honor the spirit of generosity behind Irina’s story. 


Help enrich the life of a sick child.

We are committed to helping pediatric patients with a rare disease
or disorder.

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Learn how you can take part in supporting Defying Rare .

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