Five-year-old boy dies in Voronezh despite 150 million ruble fundraiser

Residents of Voronezh learned about Arseniy Likhachev in 2021, when a multi-million ruble fundraiser was announced for the then one-year-old boy for the world«s most expensive drug. The money was raised, but, alas, it did not save the boy. He died just before his sixth birthday.

Arseniy was born with a severe genetic disease, spinal muscular atrophy (SMA) type 1. He was diagnosed within the first year of life. The only thing that could save the child was the world«s most expensive drug, Zolgensma, a single injection of which can bring »smiley« children (as kids with SMA are called) back to life. In 2021, the drug cost 150 million rubles (approximately $1.5 million at current rates).

Spinal muscular atrophy (SMA) is a severe genetic (hereditary) neuromuscular disease in which motor neurons in the spinal cord are affected and motor nerve cells in the brainstem die. Type 1 manifests by 6 months of age. The child weakens, cannot walk, move, speak, swallow, or breathe. Intelligence, as a rule, is not affected by this disease.

The boy«s parents started fundraising. However, besides the huge sum needed to pay for the drug, permission from a medical board was required for its administration.

In winter 2022, it became known that the board considered administering Zolgensma to Arseniy inappropriate. For the drug to work, the patient must meet a number of requirements. Arseniy did not fit. According to the doctors, the injection would not have saved him. Meanwhile, the money for the drug was raised. The last missing 60 million rubles (approximately $600,000 at current rates) was contributed by a philanthropist who wished to remain anonymous.

The boy«s parents fought for the medicine for Arseniy. Volunteers, charity fund employees, and opinion leaders spoke out in support of the child at the time. However, a second board review finally refused the injection—it would not have helped. The money raised for Arseniy was given to treat other children.

The news that the boy was no more was published on social media by his mother Yana, three months after her son«s death. Even knowing that your child is not destined to live long and happily, accepting his passing is not easy at all.

«Thank you for letting me be your mom for almost a whole six years,» wrote Yana Likhacheva in a farewell post.