SMA Type 2 patient Doruk Çukurcu, who uses four doses of medication in Izmir, has the difficulty of not taking the drug due to the pandemic, despite the approval for the fifth dose, with the drugs used by SPINAL Muscular Atrophy (SMA) patients in the scope of payment. Arzu Çukurcu, who said that they observed positive developments in her son with the use of medication, stated that the drug intake was delayed due to the coronavirus epidemic and expressed that they were afraid of the disruption of the treatment.Doruk, a SMA Type 2 patient, the 5-year-old son of Arzu (39) and Uygar Çukurcu (34), who live in Çiğli, has gotten his long-awaited medicine. Little Doruk, who was tested at the age of 6 months because he could not step on his feet and was diagnosed at the age of 1, was happy to start treatment with the drug brought from abroad after about 4 years of struggle. Stating that the fifth dose was approved for Doruk, who used four doses of medication, but the pandemic process intervened, the mother Arzu Çukurcu stated that they should take the new dose 1.5 months ago and said, “When we first met the disease, Doruk was very sick, we were even in the intensive care unit. We had no immunity. We waited for a long time. The Ministry of Health approved the drug and we took 4 doses. There were good improvements. The immunity is better now. We go to the hospital just to take our medicine. He said, “Mom, I am stronger.” His movements increased. We were going to take the fifth dose. Our medications were interrupted due to the coronavirus epidemic, “he said.
Arzu Çukurcu stated that they took the drug every six months and took the last dose 8 months ago and said: “We had to take the fifth dose 1.5 months ago. My son started to regress because he could not take medicine. He does not feel as strong as before.” He used to hold his head better. He could easily pull and push his legs. Now he started to get tired more quickly. If he does not take the medicine, his immunity will decrease, his movements will decrease. That medicine keeps our children alive. We are living in fear of ‘what will happen tomorrow’. “DORUK WANTS TO RUN
Expressing that the pandemic also negatively affected Doruk’s treatment, Arzu Çukurcu said that they experienced more anxiety during the period when the virus epidemic was intense and said, “They called to the hospital for scoring. Scoring is made before each drug purchase. But if we agree to go to the hospital, we were asked to sign. Chronic illness. “We could not go to the hospital out of fear. Scoring was delayed. Now we are waiting for them to call for medication. I want this disease to end as soon as possible and our children to continue their medication.” Saying that she is looking forward to the medicine, Doruk said, “I want my medicine to be given to me. I want to be stronger, I want to run.”