Britain’s 5-Month-Old Arthur Suffers From Spinal Muscular Atrophy (SMA).

By the way, every person living on this earth says that there is a lot of sorrow in my life. And almost many people have it too, but what can we do. All this is a natural creation that we have to suffer. But today we are going to put such a situation in front of you, listening to which you will forget your sorrow.

Yes, we are talking about 5 months old Arthur who was born in Britain and as soon as he was born, a mountain of sorrow broke on him. Arthur suffers from a major disease called Spinal muscular atrophy (SMA) and is currently hospitalized.

Spinal Muscular Atrophy (SMA)

Perhaps you must be wondering what kind of disease this is or you may already know it. Nevertheless, let us try to know about this once. Spinal muscular atrophy (SMA) is a disease in which the patient gradually loses control of his muscles. That too to such an extent that after a time any part of the body stops working.

But Arthur can still shake his hand with great difficulty. But the sad thing is that even Arthur is not able to shake his head like other children.

There are only two methods for the treatment of this disease.

1. Spinal infusion therapy which is very painful and has to be done almost thrice a year.

2. Zolgensma which is currently the most expensive injection in the world. You will be surprised to know that the cost of this injection is being told as 1.8 million pounds. Which a common man can never fulfill. Due to which any mother or father will be deprived of getting their children treated for it.

Keeping this problem in mind, the UK government service, the National Health Service, also known in common language as the NHS, has taken responsibility for the cost of Arthur’s treatment.

According to reports, the NHS has struck a deal with the companies that make Zolgensma injections. Under this deal, the NHS will buy several doses annually to help poor children like Arthur. The company making this drug has also shown sympathy. The company has also talked about giving a discount on this drug to the NHS.

According to reports, around 40 babies are born with this disease every year in the UK alone. The treatment of this disease was difficult or you should understand that till now the treatment of this disease was not possible.

A child who develops spinal muscular atrophy (SMA) may live for a year or more, for up to two years. But now this injection of crores Zolgensma has turned the impossible into possible. Let us know how this disease is treated by this injection.

Zolgensma type is gene therapy. Its use was allowed in the US for the first time in May 2019. And now the company making this medicine claims that more than 1000 children have been cured so far.

What Is Gene Therapy?

Actually gene therapy is that the doctors first find out which gin is bad inside the body. And then a perfect copy of this bad gene with no bad is made. And then this copy gene is inserted with a special virus. And then this virus is sent under the body by injection. And when it goes under the body, it replaces that bad DNA with the right DNA. And since then the body is starting to make itself right.

For example, if we tell you, the immune system in some children is not developed properly. Yes, we are talking about the same immune system that helps us fight against Coronavirus. Some children do not have an immune system at all. So the AIDS virus is put in the body of such children, which goes under and repairs the genes.

One such example is we have Saira who is only 5 years old. It looks like an ordinary child. Saira had severe combined immunodeficiency (SCID) due to which its body was not able to fight any disease. You say that even a minor illness could have killed him.

Saira’s mother Maria Priotesa says that I did not know whether she would be alive the next day or not. I was worried a lot. when she had chemotherapy. O says that I did not know anything, that’s why I used to consider chemotherapy as cancer.

You would know that in western countries many tests are done as soon as the child is lying down. And if there is any kind of problem, he moves forward. Saira’s mother Maria Priotesa says the doctors’ tests were not being finished and I could not understand anything. Then the chemotherapy test was started and then Saira’s mother understood that the child had cancer.

After all this, the doctors told him about an experiment. The experiment was gene therapy. Saira is fine now but it is not known how long she will be fine.

The disease that Saira has is SCID (Severe Combined Immunodificiency). This disease is also known as Bubble Baby Disease.

In 1970, this disease was found in a child in Texas, USA. And for this child, the doctors said that if it comes in the grip of any virus, then it will die.

So to protect it, it was kept in a plastic bubble. In the same way as we isolate the corona patient. But the condition was also that it cannot be kept alive for more than 12 years. The only remedy for this child was the Bone Marrow Replacement process. who couldn’t and this kid died.

Claire Booth is a doctor and researcher: They say that there is no risk of rejection in gene therapy because we use only the cells of the patient.