GRANTS PASS, Ore. — A local dance studio says it launched an online bake sale in hopes of helping a baby halfway around the world after he was diagnosed with a serious, potentially terminal genetic condition.
According to Candela Dance Studio at Grants Pass, 4-month-old Kinga lives in Poland. She was diagnosed with Spinal Muscular Atrophy (SMA), a congenital degenerative disease. Although there is a treatment that could help Kinga, its cost is prohibitive.
The dance studio said it heard about Kinga through the West Coast swing dance community, as Kinga’s family member is a dancer living in the United States.
“The global ‘dance family’ is a tight-knit group,” said Melissa McRobbie-Toll, owner of Candela Dance Studio. “We try to help each other”
At birth, Kinga passed all of her doctors’ physicals “with flying colors,” Candela said. But a screening in her second week revealed she had SMA, an inherited condition that progressively destroys nerve cells in the brainstem and spinal cord that control muscle activity essential for walking, breathing, swallowing and speaking.
Infants diagnosed with SMA rarely live past age 2, the studio said. Kinga’s parents were understandably devastated.
However, there is a drug that could help Kinga – Zolgensma, a gene therapy drug produced by Novartis, is believed to replace the missing or non-functioning gene responsible for SMA.
Either way, Zolgensma is notoriously expensive, and Candela says the one-time infusion costs around $2.1 million.
“The amount seems unthinkable,” Candela continued. “Parents around the world are in a similar boat, knowing that there is a lifesaving treatment available that just seems out of reach.”
Although they are aware that their efforts will only be “a drop in the bucket”, members of the dance community have launched the Cookies for Kinga campaign to help them. They will volunteer to make baked goods, and donors can buy them online and have them delivered. Candela said all proceeds will go to Kinga’s family for the treatment.