Escuche esta historia
--:--
4:12
Small receives the most expensive medication in the world for free, to have a new life
At just one-year-old, the little boy's life took a surprising turn, equivalent, according to his mother, to having a new life.
Edward was born in the Essex region, in the south of the United Kingdom. At two months old, he was diagnosed with Spinal Muscular Atrophy (SMA). He required a medicine, for his treatment of around 2.1 million dollars, and he was able to acquire it after receiving donations, thanks to the help of many citizens.
Due to the strong spinal decay he experiences, this British boy does not have a fundamental protein for his muscle development.
This infection causes a muscle deficit and influences breathing and movement, which is why a large part of babies who experience this disease do not live for more than two years if they do not receive proper treatment.
Through a campaign organized by Edward's parents in August last year, the purchase of the drug Zolgensma was achieved.
This is the medicine that is known as the most expensive in the world, since its cost is 2.1 million dollars.
The boy's mother, Megan Willis, said her son has achieved achievements that she never thought were conceivable.
As a result of the medicine, Megan has realized that the boy can now roll over and sit by himself. It has also managed to take its first steps with company.
Parents say they are proud and very happy for Edward. They ensure that you are doing your best.
Plus, it's exceeding expectations. They assure that they are undoubtedly lucky. They comment that what they needed was for him to be able to sit by himself, to ensure that he would have an impressive life.
They added that they have been dedicating themselves to their gait for half a month and can now move their own legs with the leggings, which is a really great achievement. They say that their eyes filled with tears when they saw it, since it is an unforgettable moment.
Edward's recovery
The family had to relocate to London, so that Edward could receive physical therapy five times a week. Willis, files the advance through his Instagram account, expressed that his son's strength levels have improved, and he became a healthy, playful baby after being lethargic.
He claims that this medication has brought Edward back to life. He has another life. It is a race, not a sprint. He assures that it will take Edward much of the day to make up for lost time, but little by little it comes.
They insist that currently there is light, there is a future and, the truth, he did not imagine that Edward had a future. The first days they thought that their experience with them was going to be short, however currently they do not believe it in any way.
Zolgensma the most expensive drug
Zolgensma is the most expensive medicine in the world. However, England's public health system said it had agreed to an undisclosed cut from its usual cost of $2.1 million (£1.79 million).
The Swiss pharmaceutical campaign, Novartis, acquired authorization to sell the world's most expensive drug Zolgensma abeparvovec, which is used as a treatment to treat Spinal Muscular Atrophy (SMA).
The Slavic country's Ministry of Health admitted the drug's registration on Thursday, December 9, 2021.
The dose has a cost of 2.125 million dollars. The disease that this medicine treats is so dangerous that the victims have little life expectancy.
This disease is caused by a mutation of SMN1, which causes a decrease in the amount of SMN protein, important for the resistance of motor neurons.
One of the advantages of medication, once in the body, is that it transfers the SMN1 transgene to motor neurons and, therefore, causes an expansion in the amount of SMN protein. The drug has side effects, although they are minor compared to the indications for SMA.
Unlike other medications that must be monitored forever, Zolgensma should only be administered as a single injection to children under two years of age.
Vaccinated children after half a year of age stop losing muscle control, although medication cannot reverse the damage previously incurred by the organic entity.
