Deputy Head of President's Office: Ukraine needs a program to support patients with SMA
Photo: OP
Kyrylo Tymoshenko, Deputy Head of the Office of the President, said this in Kakhovka while talking to the parents of Adelina Motenko, who has a rare disease, spinal muscular atrophy of the first type.
Ukrinform reports.
"You're right that the state didn't deal with the issues of the SMA… When the new head of the Ministry of Health came, the President personally set him the task to do it… We don't even do screenings we've now allocated funds to start doing these screenings, and next year we'll start doing the program. Screening is the first," Tymoshenko said.
Natalia Motenko turned to the politicians and people's deputies present for help. For a year now, the family has been raising funds for Zolgensma, which costs $2.3 million. According to her, one of the American clinics issued an invoice, providing a significant discount ($500,000), and now 75% of the required amount has been collected.
"We've been raising funds to save our daughter for a year… We've lived in Poland for a whole year because our state doesn't provide treatment, there's no program to support such children… We need to close the collection by the end of autumn. Help save our daughter because we won't have another chance. The injection costs $2.3 million, we won't raise that amount," Motenko said.
According to her, they were forced to go to Poland, not knowing the language, not understanding where they would live and work. And now they've arrived in Ukraine only for a month. Natalia also explained that in Poland they were given a rapid lung ventilator so that the child could breathe.
People's Deputies from the Servant of the People party present at the briefing, in particular, the head of the parliamentary faction Davyd Arakhamia promised to join the search for funds for Adelina's treatment.
It should be noted that the Kherson region continues to raise funds for an injection of Zolgensma worth $2.3 million for the treatment of a small resident of Kakhovka Adelina Motenko. The child was also supported in the office of the President of Poland.
Her little compatriot, Maria Sakhno from the city of Tavriisk has already had this injection thanks to voluntary donations, she received gene therapy in Ukraine, this is the first time such a procedure has been performed in the country.
