2.5mln TL needed to save sick baby
THE father of a baby who has type 1 SMA (spinal muscular atrophy) has said he needs to raise 2.5 million TL towards the cost of potentially life-saving gene therapy.
Cyprus Today reported last week that the parents of six-month-old Karel Karaoğulları, who are from Yeniboğaziçi, are desperately trying to raise the cash so that their son can receive therapy from the US called Zolgensma, which costs a reported £1.79 million a dose.
Little Karel is “alive but unconscious” and connected to a ventilator in the intensive care unit of Ankara Medical Faculty Cebeci Children’s Hospital, father Yusuf Karaoğulları said this week.
Family and friends have so far raised around 300,000TL from fundraising campaigns and events, such as a recent children’s festival at Yeniboğaziçi Municipality Public Beach.
Mr Karaoğulları said that he and wife Şeyda, who also have a daughter, learned of Karel’s condition days after he was born on December 14, 2020.
They took him to Turkey in March for treatment following confirmation of the diagnosis, using “all the means at our disposal”.
“No-one should experience the pain that my child and we have been through,” he said. “My child cannot breathe . . . his movements are slowing down day by day.
“He has remained stuck on a hospital bed and on a ventilator. He is deteriorating before our eyes.”
Mr Karaoğulları continued:
“His mother is devastated. She doesn’t sleep. She doesn’t take her eyes off our child. . . After the test results came back, they hospitalised our child for a week under observation.
“Everything was normal. Later, treatment with a drug called Spiranza was started, which slowed down the course of the disease. We waited one month for the medication to come from abroad.
“He should have taken the second dose 14 days after the first dose but the medication didn’t arrive on time.
“Our child’s breathing stopped at the hotel, 20 days after the first dose. As the disease weakened his muscles, his breathing and heart stopped. After he was revived, we took him [back] to the hospital. They admitted him. The second dose had arrived on a Sunday, I was told that the medicine would be given on a Monday. They took him into intensive care.
“After that day, he lost consciousness. He was in intensive care for days. He has started to react slightly now but he has not fully regained consciousness.”
The distraught father explained that because his son is on a ventilator, he cannot receive the followup doses of Spiranza and that Karel’s “only chance” is the Zolgensma treatment.
“Unfortunately, our [Health] Ministry doesn’t cover [the costs of] Spiranza or Zolgensma treatment. Each dose of Spiranza costs 72,000 euros. Initially he needs to take four doses, 14 days apart.
“Afterwards, the patient must take this medication every four months throughout his life. We have covered all the expenses ourselves so far. Turkey was supposed to pay for Spiranza because Karel has a Turkish ID card.”
Mr Karaoğulları said that type 1 SMA can be detected by testing the would-be parents “but that unfortunately this test is not performed in the TRNC and the disease couldn’t be detected during pregnancy”.