Merve Gwen- Gurkan Demritas
The families and relatives of the children affected by SMA type 1 gathered in front of the Ministry of Health and demanded that Zolgensma be brought to Turkey and included in the SGK. “What our state should do as soon as possible is to give our children the right to life for which they are responsible,” said Camille Kurt, chairman of the Antalya SMA and the Genetic Diseases Fighting Association. “Our kids compete with SMA, hunger and time. But they are blind, deaf and dumb, they can’t be seen,” said Lehman Gunes, mother of 1.5-year-old Ibike Naz. Nisa Noor’s older brother, 4, added, “My sister has covid disease, she even beat him. This child wants to live and pay for medicine.”
Families and relatives of children affected by SMA type 1 have called on the government for their children’s right to life, they will gather in front of the Ministry of Health today. Camille Kurt, chairman of the Antalya SMA and the Association for Combating Genetic Disease, noted that she had been in Ankara for a week with the necessary contacts and said:
“This statement should be made immediately, we must give our children the right to life that it is responsible.”
“Until now, we have always continued our struggle as SMAs. Now that we have a structure in Antalya since last week, we are bringing a great platform. It has been a great development for us that NGOs now support us and join us in the struggle for life. “The criteria for our children have been dropped. We still have children in the hospital whose treatment is unfinished. We have a state, I want our state to see that, not the nation.”
I was in Ankara for a week. Reached out to leaders of all parties. I’m calling this again; Either way, we’ve made this decision with all the NGOs on the new platform. Health is the biggest thing in this world. As long as there are health problems, we cannot say that a country has developed. There are 45 countries that approve this drug and accept it for payment by SGK. What our state should do as soon as possible is to give our children the right to life, for which it is responsible. “
9-month-old Arden Om Bell’s aunt, who has SMA type 1, said the following:
“We need to recover an estimated 8 1.825 million and we can only collect 12 percent of that.”
“Arden Ömer Beler, the weight of a 9-month-old baby weighing less than 4 kilograms is equivalent to the weight of a newborn baby. This is entirely due to SMA. This is how SMA is a deadly destructive disease. We want SMA drugs. Now we have to come to Turkey.” Take care. These children suffer a lot and a lot. Money earned through the promotion process, families who do not start the campaign can never get this medicine. Much harder for this family, there are families who do not know how to start preaching. It’s very difficult for them. It’s a very frustrating process for both the publishing family and the volunteers. We have to raise about 8 1.825 million, and we’ve been able to raise only 12 percent of that. Arden Omar really doesn’t have time. “Every day he loses his ability to swallow and suck. It is very difficult to gain muscle. The sooner he takes his medicine, the more effective it is. “
Lehman Gunes, mother of SMA type 1 patient Ibike Naz Gunes, said they came from Adana and said:
“They cut our medicine because Ibike Naz’s heart stopped once and they cut our third dose.”
“We are 19 months old and we can’t take the Spinraja medicine given to Turkey. Despite the court decision, we are not given the medicine. We want both standards to be revoked and Zolgensma medicine given to Turkey abroad. No one can access it? “Although it is a disease that causes death every day, why can’t our children, who are dying every day, be cured? Abroad, the 59-year-old man is brain dead and they brought him to Turkey on a private plane, why don’t they do it with children with SMA in Turkey? They stopped our medication once because his heart stopped beating, and they stopped our third. Dosage. We took it to the Supreme Court, we won our case but they did not give us medicine. It still went to the high court, we will take it to the European court, we still can’t take medicine. This drug has to be earned for life, but Aybike is currently a 19-month-old baby, we learned to diagnose her when she was 4.5 months old. Just two doses of tin; He hasn’t given us a third dose yet.
“Our kids are competing with both SMA, hunger and time.”
A soul cannot be subject to the treatment criteria of a body, even if my child dies, let him get his due treatment, let him get his due treatment and let him die that way, we also agree with him. We can’t look our son in the eye every day in the intensive care unit without medical treatment. Even now, we put her in the intensive care unit to hear our voices. Our families are also psychologically broken, we can’t look our children in the face. We can’t say, “We’re poor, we can’t keep you alive, girl. You’re struggling for money.” But the truth is, we don’t want money from our government. We want the medicine given in Turkey and the medicine given abroad to come to Turkey, which is the right of our children. There are no criteria for shield, it is scored as if you are taking the test, if you do not pass that score, you will not take drugs. Why, isn’t that life? Aybike Naz has had a campaign for 12 months, the point we have now reached is 10 percent, our support is very low and we are not able to reach 11 percent because the exchange rate has risen. Our children are competing with SMA, hunger, currency and time. But it remains blind, deaf and dumb, it cannot be seen. “
Nisa Noor’s older brother, who has SMA type 1, said he came from Mersin and said:
“Currently, our hospital offer is মিল 1.8 million. We can’t reach 18 percent of our one-year campaign.”
“I don’t know how many times I have been here, we will try to get results here. I am 20 years old and I collect money on the street every day. They are constantly abusing us, but we are collecting money everywhere. I said I am 20 years old, my 80 years old, I lost my senses nowadays. Our hospital offer now 1 I wonder who has 800 thousand dollars, how to collect it?
“We are in a situation where they no longer trust children from SMAs.”
We do not understand what they are trying to do, I can say 10 things to treat these children. For example, the state does not collect taxes from all places? He can tell the citizens, ‘We want to collect taxes on rare diseases, so that these children do not die, so that they can afford their treatment’. Who can object to this? He does not object because every citizen is a person with an SMA. These rare diseases are never obvious, they are genetic. If they say so, that’s enough for us. No one believes us. When 10 people pass to collect money, at least 5-6 people are wondering if the money is going to this child. I have passed the governor’s permission, brother, I am showing my identity so that they can trust us now. We are in a situation where they no longer trust children with SMA.
“My sister was sick at Kovid and even beat her. Make sure it can kill SMA too but this drug has a meaningful purpose.”
My brother is 4 years old, he can have older children now. Grabbing a child’s life, his muscles are melting every day and he lived to be 4 years old. My sister fell ill at Kovid and was even beaten. I’m sure it can beat SMA as well, but this drug is a paid drug. This kid wants to live and the drug makes sense and it’s ridiculous. There is always an obstacle in front of us; You can do it, but you can … We always try to achieve the goal. SpinRaja is using drugs, but the standard is not being erased in any way, it is at their mercy. If he raises his hand 90 degrees, he has to do it 95, otherwise he can take the next dose. If no response is received from the patient, the dose is canceled and the child will not be able to take the dose unless he / she improves himself / herself through physical therapy. The state does not help in this way. Let the state say I can’t pay for it, I pay. Let him publish a child every day, raise money for him, say I don’t have money, let him say this openly. Let’s not say we have problems everywhere, we’re in a really bad situation. “
– News (@news) June 15, 2022
ANKA / Current