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An auxiliary bishop of Krakow, the Franciscan Damian Muskus, has started an online fundraiser to help cover the medical expenses of an infant named Zosia Pająk, who suffers from spinal muscular atrophy (SMA) – a genetic disease that is fatal if untreated. On this occasion, he also decided to take care of his physical health … and the cleanliness of the plates at parishes in his diocese.
“(…) on the pages of groups supporting the sick girl I posted a somewhat humorous notification about my intention to get rid of abdominal obesity 🙂 by increasing physical activity. Since sports, including amateur sports, need cheering, I proposed that for every at least 45-minute activity I undertake, money from my supporters will be credited to Zosia’s account 🙂” explains the clergyman in a Facebook post.
The fundraiser was quickly supported by 120 people. His fundraiser is part of a larger campaign to raise the money necessary to pay for gene therapy to cure the disease. The therapy costs around $2,300,000.
“Diet” fundraising is not the only initiative organized in recent days by Bishop Muskus to support little Zosia. The bishop also pledged to wash dishes at every parish that agrees to host volunteers helping with the collection. He also put up for auction a teacup with his bishop’s coat of arms (which eventually sold for $480).
For last year’s fundraisers to benefit Zosia’s healthcare expenses, Bishop Muskus put on the auction block – among other things – his bishop’s ring, a pen used by Benedict XVI, cufflinks, a watch, papal rosaries, and a Nativity scene made by the people at the Brother Albert Foundation.
The amount raised from the sale of these items exceeded $23,000.
The image of health with a hidden disease
Zosia Pająk was born last May 4. According to the organizers of the fundraiser, she was a large and strong child. There was no indication that a deadly disease lurked in her body. “A few days after her birth, she came home. We were so happy! The most important thing for us then was that Zosia was healthy. Moments later we found out how fickle fate can be,” wrote Zosia’s family on the fundraiser website.
Spinal muscular atrophy (SMA) is a genetically caused disease that causes the death of nerve cells responsible for transmitting signals to muscles. Rapidly progressing in newborns, the disorder leads to atrophy of almost all muscle groups. This results in complete paralysis, loss of breathing, and death.
Until recently, SMA was incurable; several innovative but costly therapies are now being implemented, effectively halting the progression of the disease. The most effective of these is gene therapy. Since last September, it has been subject to reimbursement from the National Health Fund; however, this reimbursement does not cover all cases of the disease.
Since April 2021, screening tests in Polish hospitals have been conducted on newborns to detect and treat the disease before the first symptoms appear. Poland is one of only four countries in the world so far implementing this type of prevention.
And today we celebrate...