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The president of Make-A-Wish New Jersey speaks about the impact of granting a wish to a child living with a rare disease.
In an interview with HCPLive, Tom Weatherall, President and CEO of Make-A-Wish New Jersey, said that the greatest testament to the power of granting a wish to a child with a critical illness is displayed by the medical community.
"Together, we create life changing wishes for children with critical illnesses," he said, "and certainly so many rare diseases fall under, and qualify within those those parameters."
He quoted the foundation's mission statement, saying that it begins with the word "together" because it's not just the foundation or the donors that help grant wishes, but the medical community and those working within rare diseases that also see an effect on their patients.
"Actually, over 90% of referrals come from the medical community, from doctors and nurses, child life specialists, social workers, because they've seen the life-changing impact that a wish can have on their patients," he said. "And they know that we pick up where science and medicine leave off."
Weatherall shared that he's been told many times the work done through the Make-A-Wish foundation–granting wishes to these children–is just as important as the treatment protocols.
"We're coming in and we're treating the spirit," he said.
Childhood cancer is a rare disease. According to the National Organization of Rare Disorders (NORD), many rare diseases result in the premature death of infants or young children, or are fatal in early childhood.
Weatherall shared a story about a boy named Chris, who was diagnosed with leukemia back in 1980. Chris had the "odds stacked against him" with less than a 10% chance of survival.
Today, he said, those odds have flipped. Science and medicine are always changing and many illnesses, including rare diseases have improved, and will continue to do so.
"We're still here 40 plus years later," Weatherall said, "and we'll still be there for all these children battling rare diseases who qualify for a wish."