Five-year-old Adelya suffered from an undetermined condition for almost two years before receiving an accurate diagnosis. Her parents took her to doctors in different countries, and now the only way to help the girl is with the "Zolgensma" injection, which costs $2 million.
“In August, we learned about the diagnosis in Moscow, then confirmed it in China. We underwent examinations and tests in Kyrgyzstan, Turkey, Moscow, and China for two years,” shares Rahima Torobekova, Adelya's mother.
“As a mother of four children, I immediately noticed that something was wrong with the youngest. When Adelya was about one year and ten months old, she began to walk on one foot. The orthopedist prescribed special shoes, massage, and paraffin, but there were no results even after four courses of treatment,” she recounts.
The situation forced the parents to consult an orthopedist again, who referred them to a neurologist. The doctors suspected that Adelya might have Duchenne muscular dystrophy.
“Since the necessary tests were not conducted in Kyrgyzstan, we decided to go to Turkey for a more accurate diagnosis. There, we underwent genetic testing, which did not confirm Duchenne muscular dystrophy, but the doctors suggested spinal muscular atrophy and recommended repeat tests,” added Rahima.
“Recently, we visited Dubai for tests necessary to confirm the possibility of Adelya receiving the 'Zolgensma' injection. There had already been cases in Kyrgyzstan where money was raised for treatment, but the medication was not suitable. It all depends on the presence of antibodies, which can either help or destroy the effect of 'Zolgensma.' Fortunately, our tests showed that the medication is suitable for our daughter,” she explains.
Adelya cannot play, run, or jump like her peers. She takes medication daily, but the only chance for improvement is the 'Zolgensma' injection.However, the cost of the injection is $2 million, which exceeds the family's financial capabilities. The parents have been forced to start fundraising to save their daughter.
“We are reaching out for help. Every contribution is a chance for our daughter to live a full life,” says the mother.
