A Polish family is raising money to save their five-month-old daughter, who suffers from a rare genetic disorder that means she may not live more than two years.
SAN JOSE — The past month has felt like a nightmare for Agnieszka Klosinska and her family back in Poland. All they can think about these days is money: About $2.3 million to be exact.It’s a staggering amount for something priceless. Unless they can come up with $2.1 million for the life-saving drug and another $200,000 for the subsequent therapies, the newest member of their family — five-month-old baby Kinga Rydz — will likely die.
Just five months ago, Klosinska and her cousin Justyna and Piotr Rydz were over the moon and ecstatic celebrating the birth of their daughter Kinga, who seemingly was born healthy and passed all of the doctors’ initial exams with flying colors. Until two years ago when drugs like Zolgensma were developed, there were no treatment options available for children with SMA, which is the leading genetic cause of death for children. Novartis did not return a request for comment on the drug’s cost.
Six months is usually when symptoms really start to show for babies with SMA. Any symptoms of atrophy that may appear before the infusion won’t be reversible. And babies at two years old or weighing over 28 pounds are no longer eligible to receive the therapy. Agnieszka Klosinska poses for a portrait on Feb. 24, 2022. Her 5-month-old niece, Kinga Rydz, who lives in Poland, was born with Spinal Muscular Atrophy, a hereditary condition that progressively destroys nerve cells in the brain stem and spinal cord that control muscle movements like breathing, walking, swallowing.
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