San Jose woman fights to raise $2.3 million for life-saving treatment to save her niece with genetic disorder
SAN JOSE — The past month has been a nightmare for Agnieszka Klosinska and her family in Poland. All they think about these days is money: around $2.3 million to be exact.
“Who has this?” Klosinska, a San Jose resident, said in tears.
That’s a staggering amount for something priceless. Unless they can find $2.1 million for the life-saving drug and another $200,000 for later therapies, their newest family member – five-month-old baby Kinga Rydz – will likely die.
“My little niece is falling through the cracks,” Klosinska said. “How is that fair? One baby can be born healthy, then another is born with a price tag of $2.1 million.
Just five months ago, Klosinska and her cousin Justyna and Piotr Rydz were overjoyed to celebrate the birth of their daughter Kinga, who was apparently born healthy and passed all initial doctors’ exams with flying colors.
But then the news quickly turned sour and everyone fell silent. Kinga was diagnosed with spinal muscular atrophy, an inherited condition that progressively destroys nerve cells in the brainstem and spinal cord that control muscle movements like breathing, walking and swallowing. Doctors said she won’t live more than two years.
“We froze,” said Justyna Rydz. “It felt like our whole world had come crashing down.”
After doing research, talking to everyone they knew, and remaining hopeful, the Rydz family discovered a drug called Zolgensma that could potentially save their daughter’s life.
The drug – made by Swiss multinational pharmaceutical company Novartis – is a gene therapy used to treat Kinga’s SMA through a single infusion. It works by replacing the missing or non-functional gene responsible for SMA with a new working copy of the gene.
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 in children. Novartis did not return a request for comment on the drug’s cost.
Zolgensma is one of the most expensive drugs in the world, and the $2.1 million price tag is an amount that seems unimaginable, unattainable, and unfair to the Rydz family.
“Impossible,” said Rydz. “But what am I supposed to do?” I am his mother, I can’t give up.
On top of all that, the Rydz family is raising money against the clock. Baby Kinga is due for the infusion next month.
Six months is usually when symptoms really start to show in babies with AS. Any symptoms of atrophy that may appear before the infusion will not be reversible. And babies two years old or weighing more than 28 pounds are no longer eligible to receive the therapy.
Since Kinga was born, the Rydz family in Poland and Klosinska in the Bay Area have worked tirelessly to raise funds in every way possible. They started by asking friends and family, then went public with Kinga’s whereabouts through emails to major corporations and posters – so many posters – bearing Kinga’s chubby face. .
Klosinska and the Rydz can’t even count the number of cookies, cakes and pastries they baked and sold to save Kinga’s life. And they have created Facebook and GoFundMes pages, and Klosinska is currently creating Tik Tok and Twitter accounts to promote her story.
It’s a daunting effort, Klosinska said, and it’s not working.
“It was very difficult to raise the money,” Klosinska said, noting that only about 3.3% of their goal had been met. Time is running out, they become desperate. “They still need everything,” Klosinska said. “We hope to spread the word and show his face and tell people ‘this is real, this is SMA, this is a baby with a timeline and a price. “”
The diagnosis and the struggle for money have been difficult for the Rydz family. It’s not easy waking up every day begging for money, Rydz said. It’s terrifying, she can’t sleep peacefully, and it’s a “constant heartbreaking feeling” for Rydz.
“We’re extremely stressed, but it’s something you learn to deal with,” Rydz said. “You just have to move on. It’s a very heavy feeling to have on your shoulders every day trying to help and push. We have times when we want to give up but I can’t.
Baby Kinga is doing well so far, but it won’t last. She doesn’t have organ failure yet, but her extremities – fingers, toes, feet and hands – are already starting to weaken, so she goes to physiotherapy three times a week.
“It’s hopeless and I often feel helpless,” Rydz said. “It’s a real battle to keep Kinga and ourselves comfortable and stay positive for her.”
For Klosinska in San Jose, fundraising is her top priority for the near future. She hopes people will donate on their crowdfunding page and follow Kinga’s story on their Facebook page.
“It takes time and it’s not easy,” Klosinska said. “It’s about digging, researching and writing emails. It tries to reach people, anyone, no response, wrong person, wrong email. It sends personal notes to CEOs, celebrities and shows the connection. I’m so afraid we can’t make it. But we must keep hope. »