Fighting For Stefan

About Stefan Marcel Suciu

Stefan is an almost three years old toddler who lives near Oradea, Romania, with his mother and elder sister Alina. Stefan suffers from a cruel diagnosis, SMA1 or spinal muscular atrophy type 1.

Up until seven months old, Stefan’s physical development was normal. The onset of the disease occurred almost overnight. He used to be able to raise his head up high and sit on his tummy, supporting his torso on his arms and crawling towards objects and persons.

But suddenly, Stefan became immobile and he could barely breathe.

What is SMA1?

Spinal muscular atrophy is a genetic disease characterized by the progressive loss of motor neurons (the nerve cells that control muscle movement).

The severity of the disease varies from type 0 to type 4; whereas type 0 patients don’t survive outside the womb, type 1 - which is what Stefan was diagnosed with - is the most severe type of the disease.

Infants with SMA1 have symptoms that include hypothonia (weak muscle tone), difficulty moving, eating, breathing and swallowing. They are unable to raise their head or sit unattended.

Untreated, SMA1 patients lose their lives before turning two, usually by cardiac arrest (the muscles responsible with breathing stop functioning).

Stefan’s life depends on the world’s most expensive treatment, ZolgenSMA

Stefan defied all odds after his diagnosis, impressing his doctors and winning the nickname “The hero of SMA1 babies”.

Immediately after the diagnosis, Stefan began his treatment with Spinraza, a drug that delays the effects of SMA1, but doesn’t stop the disease.

In spite of the initial massive loss of physical acquisitions, Stefan reacted positively to Spinraza. Due to an immense effort on both doctors’ side and his family’s, and through regular physical exercises performed under the attentive supervision of physiotherapists, Stefan has made incredible progress: he can support his body on his four limbs, he can support his head and he can roll over.

For his recovery to be even better and definitive (standing, walking), Stefan needs more help. As mentioned above, Spinraza only delays the effects of SMA1, therefore Stefan is currently at risk of losing the battle against this disease any time.

The only treatment that can definitely stop SMA1 from evolving is ZolgenSMA, a drug whose costs raise up to $2.100.000, making it the world’s most expensive.

Because the treatment is not covered by the Romanian social insurance, Stefan’s only chance of receiving ZolgenSMA is at a foreign clinic. This means that, to the whopping $2.1 million, are added the costs of administering the treatment and the medical supervision required post administration.

ZolgenSMA administration in the European Union

Starting from May 2019 ZolgenSMA is approved in the EU with a weight limit of 21 kg. At the moment, Stefan weighs 12kg, making him an eligible patient to receive the treatment under European law.

Noel’s Foundation raises funds for Stefan

Noel’s Foundation was established in January 2020 with the aim of helping baby Noel Olyus raise the necessary funds for ZolgenSMA. The campaign was a success and the Foundation’s team decided to continue helping other children who suffer from the same diagnosis receive the lifesaving treatment.

From January 2020 and until October 2020, the Foundation successfully raised the funds for baby Noel Olyus ($2.4 million) and Alessia Curca ($2.5 million). Luckily, Alessia won the ZolgenSMA lottery organised by the drug’s manufacturer, Novartis. As a result, the funds were transferred to Ayan Statie.

Starting the 14th of October 2020, Noel’s Foundation raises funds for Stefan Marcel Suciu. In two weeks, the Foundation, through an impressive team of volunteers and a massive number of donors (over 400.000), has managed to raise approximately $1.700.000. The Foundation continues its mission of helping Stefan Suciu receive his lifesaving treatment, ZolgenSMA.

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