For Serbian mother Timea Gajodi, watching her 11-month-old child grow is a nerve-wracking race against the clock to raise more than US$2 million to treat his rare disease.
Her only way to find such a sum has been to put her baby’s face on a billboard in the type of fundraising campaign that has taken Serbia by storm in recent years, raising millions for medical treatments abroad.
Her son, Oliver, has spinal muscular atrophy (SMA), which makes the muscles weaker and affects about one in 10,000 newborns.
Without treatment, it results in death or the need for permanent ventilation by the age of two in 90 percent of cases.
“I never know what’s waiting for me when I go into the intensive care unit. He is currently stable, but it doesn’t mean he will be in half an hour,” Gajodi told reporters of her son, who is on a ventilator in a hospital in the city of Novi Sad.
“I just want to save his life,” the 28-year-old said.
Oliver has received treatment in Serbia, which his mother said helped him “immensely.”
However, she has her hopes pinned on another drug, which he would have to go abroad to receive, but would “halt the disease’s progression altogether,” she said.
Known as the “world’s most expensive drug,” Zolgensma is a one-time gene therapy.
Pharmaceutical giant Novartis, which produces it, says that the cost reflects the fact that gene therapy is a transformative new type of treatment and is 50 percent cheaper than current alternatives.
Gajodi’s fundraising campaign is powered by text messages, allowing people to donate 200 dinars (US$2.08) each.
Oliver is one of five babies in Serbia with SMA whose parents have turned to the public in this way since May.
Their campaign has attracted near-daily media coverage.
Within half a year, the poor Balkan country — where the average wage is under US$600 a month — has raised about 8 million euros (US$9.79 million) to secure the treatment for four of the babies.
More than 100,000 people have also signed an online petition demanding local municipalities divert the budget for this year’s New Year’s Eve celebrations to helping the five infants.
Seven municipalities have done so, although not big cities such as Belgrade and Novi Sad.
Oliver is the last of the five babies and has so far received about 300,000 text donations, amounting to more than 150,000 euros.
According to local media, some donors have gone as far as selling their summer homes to help, or auctioning off other assets online.
Earlier this month, half a million viewers logged on to watch Serbian pop star and 2007 Eurovision winner Marija Serifovic’s online fundraising concert for 14-month-old Minja Matic, who also has SMA.
“I will sing as long as I have a voice, until we collect the money for Minja,” Serifovic said.
Shortly afterward, the family announced that it had met its target.
Billboards with children’s faces have become a regular sight across Serbia and even refugees have organized fundraising in four migrant reception centers.
Not all the campaigns are for such costly treatments.
Healthcare in Serbia has limited reach when it comes to innovative or consistent treatments, humanitarian organizations say.
The Podrzi Zivot fundraising foundation’s Katarina Danojlic said that parents contact her organization daily, often in a panic because they have been shrugged off by the state.
“If the health system did its job, our organization wouldn’t have to exist,” Danojlic told reporters.
Serbia has a budget for funding treatment abroad for children with rare diseases, but humanitarian organizations say that it is not enough.
Slavica Vasiljevic, whose six-year-old son, Jovan, has cerebral palsy, raised almost 60,000 euros for him to be treated in Croatia.
“After the treatment, he was cognitively better, with more refined motor skills, and he got much better in chewing his food,” she said.
“Now he can even stand on his own, for a few seconds,” Vasiljevic said with a wide smile.
Critics accuse the government of misplaced priorities, citing the millions spent on projects such as building a musical water fountain in the capital.
However, Serbian President Aleksandar Vucic has said that fundraising campaigns are common in “almost all Western countries.”
He said that the drug Spinraza for treating SMA that some doctors claim to be just as effective as Zolgensma was available in Serbia.
One commentator on social media proposed a different solution: “Let’s pay politicians by sending texts, and treat children with money from the budget.”
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