Rare Spinal Baby Saved By Worlds Most Expensive Medicine

Story By: Kathryn Quinn, Sub EditorJoseph GolderAgency: Central European News

Video Credit: CEN/ Muscles For Michael

This adorable baby has been given a second shot at life after being given a medicine dubbed the ‘most expensive in the world’ to cure a rare spinal illness.

The parents of one-year-old Michael, Marina and Oleg from Ludwigsburg in the southern German state of Baden-Wuerttemberg fought for their child to be given the life-saving drug which can cost 2.1 million EUR (1.85 million GBP) per injection.

Now after nearly one-year of fighting to save their son, the child has been given the life-saving drug. Michael suffers from an extreme form of Spinal Muscular Atrophy, a life-threatening disease caused by a defective or missing SMN1 gene. Without this gene, infants with SMA lose the motoneurons responsible for muscle functions such as breathing, swallowing, speaking, and walking.

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Pictures Credit: CEN/ Muscles For Michael

Michael was born a healthy baby, but at just six-weeks-old his parents noticed he was dropping his arms abruptly and looked very powerless. Just one day later they were given the devastating diagnosis and doctors warned Michael may not live to see his second birthday.

The only hope was a life-saving injection of a drug called Zolgensma developed by Swiss drug giant Novartis, which had only just been approved for use in the USA.

The devastated parents started a fund-raising campaign called ‘Help Michael’ to raise funds for the medicine. A total of 1.3 million EUR (1.15 million GBP) was raised by donors from around the world.

Then following appeals by the parents the child’s health insurance company approved the family’s hardship application and confirmed they would pay the costs of the drug.

Michael has now been given the injection.

In an emotional posting on social media, Michael’s parents wrote: “If you firmly believe in something and fight against it, then it will eventually be true with your support, your strength, prayers and your faith in miracles we have done the impossible – Michael got the life-Saving Infusion today. At the beginning, we were few. But with you we became more and more daily. Your support gave us more confidence with every hour and every day. You guys gave Michael muscles and keep us the strength to continue – until the great goal… until today. Because today Michael is allowed to celebrate a new birthday. In deep gratitude, your Michael, family and friends”

Since being given the injection, Michael has returned home and it is hoped he will now live a normal life. All children treated with this drug in the USA survived and were able to develop their muscle usage and develop new motorial skills.

The donations which were collected by the Deutschen Muskelhilfe (German Muscle Help) are now to be put to use helping others.

The case is similar to the case of nine-month-old Pia in Belgium, who recently made headlines and who also has spinal muscular atrophy type 1 (SMA) and would only need one injection of the Zolgensm drug, at an estimated cost of 1.9 million EUR (1.68 million GBP).

Like in Germany, the drug is not covered by healthcare in Belgium and not approved for use in the European Union.

Her desperate parents managed to raise 1.9 million EUR from almost a million SMS donations in just over 24 hours so they can buy her the world’s most expensive drug.

Pia is now awaiting the life-saving treatment.

Mum Ellen, who is from Wilrijk, a municipality in the Belgian province of Antwerp, told local media: “It will take 40 days for the money to arrive in the account, and then we can book our flight.” She added that if they went to America, they would probably go to a specialised hospital in Chicago.

After the viral wave of donations, Ellen told local media: “I cannot believe it. Thank you, thank you, thank you, thank you to everyone who has already sent an SMS or put money in the account. We have never had so much hope of saving Pia as we do now. There are no words for that.”

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