Home / Europe / Baby Pia: Belgian parents raise €1.9m for life-saving treatment

Baby Pia: Belgian parents raise €1.9m for life-saving treatment

Pia being held by her mother, Ellen De Meyer

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Inneke Gebruers

Image caption

Ellen, Pia’s mother, said the response to the family’s fundraising campaign was “overwhelming”

The parents of a nine-month-old girl who has spinal muscular atrophy (SMA) have raised €1.9m ($2m; £1.7m) to cover the cost of her life-saving treatment.

Pia, who lives in the Belgian city of Antwerp, requires the drug Zolgensma, which has not been approved for use in Europe but is available in the US.

The sum needed to fund a single course of treatment was reached on Wednesday after more than 900,000 text donations.

“I can fly instead of crawl,” a message on the TeamPia fundraising page said.

The money was raised through a text messaging donation service – €2 for each text received – launched just days ago and through contributions to a campaign posted to the crowdfunding site GoFundMe.

“It is overwhelming that a country can come together for something like this,” Pia’s mother Ellen De Meyer told Belgium’s VRT News, adding: “The fact that this happens in two days is insane.”

Belgium has a population of 11.4 million and Ms De Meyer said almost one in 10 of them had contributed.

What happens next?

The family told the BBC that they were now seeking reassurances from the telecoms company that it would drop its usual service charges for the texts.

Image copyright
Inneke Gebruers

Image caption

Ellen, Pia and Tim will travel to the US as soon as the funds are deposited in the family account

Ms De Meyer said that the money raised would be transferred to a bank account set up for Pia within 40 days, and that the family would then travel to the US for treatment.

SMA is a genetic condition that affects the nerves in the spinal cord, weakening muscles and making it difficult to move, breathe and swallow. Babies who suffer with the most severe form of the condition, known as SMA type one, have a life expectancy of up to two years.

On the TeamPia website, which was set up to raise awareness of the disorder and to campaign for funds, the family posted a message highlighting Pia’s need for the new “miracle” treatment.

A wondrous medicine was invented, called Zolgensma. It is a gene-therapy, administered in one shot, that will put the [missing gene] into my DNA,” the post reads.

“The first results of this medicine are very promising. I could lead a long, beautiful life, in which I might even learn to walk, or at least be more independent.”

Pia was born on 27 November and was diagnosed with SMA type one in May.

Why is the drug so expensive?

The treatment, which involves a single course of Zolgensma being administered by injection, has been successful in trials on more than a dozen infants in the US.

However, the high cost has been criticised and an application for the drug’s approval by the European Medicines Authority (EMA) is still pending.

Health Minister Maggie De Block said that while the drug was extremely expensive, negotiations over the cost would not take place until it had received European approval.

Novartis, the Swiss-based pharmaceutical company that produces the drug, said the cost of the treatment was high because it was “a one-off, transformative therapy for an extremely rare disease”.

“We are aware of Pia and the efforts to facilitate her access to treatment,” Novartis said in a statement on Tuesday, adding: “We also recognize that patients and families around the world are interested in gaining access to treatment as quickly as possible.”

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Baby Pia: Belgian parents raise €1.9m for life-saving treatment

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