Rapid motor neuron death causes inefficiency of the major bodily organs. Those with SMA 1 rarely survive beyond 2 years.
The Swiss drug company Novartis has developed a drug to treat SMA 1. However, it is still awaiting approval from the European Medicines Agency and as such the cost of the drugs are not refundable by the Belgian Health Department. A course of treatment with the new drug is expensive to say the least. The family needed to raise 1.9 million euro to be able to pay for their daughter’s treatment at a hospital in the United States. On Monday their plight was given media attention and a fundraiser was launched. This involved those that wished to take part sending a text message. Each text message would cost 2 euro.
Soon the mobile phone operators agreed to not to take their cut of the 2 euro, meaning that all the money raised went straight to the family. Sometime on Tuesday night the number of fundraising texts sent reached 900,000. This meant that 1.8 million euro had been raised in less than 2 days. With the 100,000 euro that had been raised previously the family had reached their target.
Although the treatment with the drug Zolgensma won’t cure the baby of SMA 1, it will considerably improve her quality of life.