The families of the children affected by SMA gathered in front of the Ministry of Health

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 is something our government should do immediately to give our children the right to life.”

“Until now, we have always continued our struggle as SMAs. Now that we’ve entered a formation in Antalya since last week, we’re bringing a big platform. It has been a great development for us that NGOs now support us and join us in the fight for survival. We expect the same participation from our state. That being said, our standards regarding children have been removed, we still have children in the hospital whose treatment is incomplete and our children are stuck with those standards. We want our government to deliver on its promises as soon as possible. Our 113 children were saved, what is the sin of the rest of our children? So much effort is spent as a nation to save these children, but we have a state; I want our state to be protected, not the nation. We hope that the state will work with utmost sincerity from the Ministry of Health to end all the problems of children including SMA as soon as possible.

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 have received only 12 percent of that.”

“A 9-month-old baby weighs less than 4 kilograms, the weight of a newborn baby. This is entirely from SMA. This is how SMA is a disease of deadly destruction. We want SMA drugs to come to Turkey and the state will take care of us. These children are suffering a lot. Families who do not start a campaign will not be able to get the drug in any way. This is much more difficult for families, there are families who do not know how to start preaching. It is also very difficult for them. Collecting that money and publications is a process that involves both the family and the volunteer. We had to raise about 8 1.825 million and we were able to raise only 12 percent of that. Arden Omar doesn’t really have time, losing his muscles every day, he loses his ability to swallow and suck. It is very difficult to gain muscle. The sooner she takes her medication, the more effective it is in the process after taking her medication.

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.”

“She is 19 months old and we can’t even get SpinRaja’s medicine in Turkey, we are not given her medicine despite the court’s decision. We want both standards to be revoked and Zolgensma drugs to be given abroad in Turkey. When the state is so strong then why our children are not getting any opportunity for these treatments? Although it is a disease that causes death every day, why can’t our children, who are dying every day, be cured? The 59-year-old man was brain dead abroad 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 because Ibike Naz’s heart stopped once, and they also stopped our third dose. We took the matter to the Supreme Court, we won our case but they did not give us medicine. At the moment, it is still in the High Court, we will take it to the European Court, we have not yet received the medicine we won. He has to earn this medicine for life but Ibike is now a 19 month old baby we got his diagnosis when he was 4.5 months old and it is only two doses given by the government; He hasn’t given us a third dose yet.

“Our children are competing with SMA, both 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 the blind, the deaf, and the dumb remain.

Nisa Noor’s older brother, who has SMA type 1, said he came from Mersin and said:

“At the moment, our hospital offer is 1 1 million 800 thousand We haven’t been able to reach 18 percent in our one-year campaign. “

“I do not 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 collect money everywhere. I said I was 20 years old, I was 80 years old, I lost my senses nowadays. At present our hospital offer is 1 lakh 600 thousand dollars, I wonder who has this money, how to raise it? We didn’t even get close to 18 percent in our one-year campaign.

“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 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. “

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