WorldThe “new life” of the baby who received a...

The “new life” of the baby who received a free treatment with the most expensive medicine in the world

-

At just 1 year old, Edward’s life took an impressive turn, comparable, according to his mother, to having “a new life.”

And is that this British baby, born in the county of Essex, suffers from spinal muscular atrophy (SMA), which means that you lack a protein vital for muscle development.

This disease causes muscle weakness and affects movement and breathing, which it causes most babies with it to live no more than two years without proper treatment.

Edward He received it last August when, thanks to a campaign by his parents, he had access to a new gene therapy with the drug Zolgensma, known to be the most expensive drug in the world, at a cost of US $ 2.1 million.

Megan Willis said her son has achieved milestones that he never thought would be possible.

He noted that he can now roll over, sit alone, and has taken his first assisted steps.

“We are so proud of Edward. He is doing incredibly well. He is far exceeding our expectations. We are incredibly lucky. All I ever wanted was for him to be able to sit down and then I knew he would have an amazing life,” she said.

We have been working on his gait for a few weeks. and she moves her own legs in the leggings, which is a really cool achievement. Tears welled up in my eyes when I first saw him. I thought ‘this is how it should be’, it was an amazing moment, “he added.

Progressive recovery

The family moved to London so Edward could receive physical therapy up to five times a week.

Willis, who documents Edward’s progress on Instagram, said his energy levels have really improved and he has gone from being lethargic to being a normal, cheeky and playful baby.

This medicine has brought Edward back to life. Has a new life. It is a marathon, not a sprint. It’s going to take a long time for Edward to catch up, but he’s slowly catching up, “she expressed.

Zolgensma is considered the most expensive drug in the world, although the public health of England assured that it had negotiated an undisclosed discount on its regular price of US $ 2.1 million (1.79 million pounds sterling).

Approximately 65 babies are born with SMA in England each year.

Megan Willis and John Hall say they are very excited about Edward's future.

Edward, who was diagnosed at 2 months of age, was receiving another drug called Spinraza, which consists of regular injections in the spine for life, compared to the single injection of Zolgensma.

Because it is such a new drug, the long-term results are not known, but Willis said that believes this generation of babies with SMA will be the first to reach adulthood.

He explained that at this time last year the situation was terrible, since the baby had just been diagnosed and they did not know if he would survive.

But now the family can start the new year knowing that the little one is receiving the best possible care.

“Last year, we asked ourselves ‘what does the future hold?’, ‘Are we going to lose our baby?'” He said.

“Now there is light, there is future and honestly, I didn’t think Edward would have a future. I thought his time with us was numbered, but now I don’t think so at all,” she pointed out.

________________________________

.

spot_img

LEAVE A REPLY

Please enter your comment!
Please enter your name here

Latest news

The day Muhammad Ali stayed at the Crillón, fought at La Bombonera and ate grilled chicken

Muhammad Ali he could not be less than a king. It never was. As soon as he...

Starts fifth consecutive week down for the dollar in Peru, by Moisés Otero

Lima, January 17, 2022Updated on 01/17/2022 07:22 pmThe trend that began on December 21 continues and the dollar enters...

UN agency completes report on Ryanair flight diverted to Belarus

The investigative report on the diversion of a commercial flight of the airline Ryanair to Belarus, last spring, was...

The Best 2021: Tuchel won the best coach award at the FIFA gala

Lima, January 17, 2022Updated on 01/17/2022 02:08 pmChelsea coach Thomas Tuchel has been recognized as the best coach of...

Elliot Moss talks about his work in the pandemic: “The most valuable thing I got out of this was imposing structure on the day”

For people like American musician Elliot Moss, the pandemic pushed him to find the discipline he needed. Moss...

Lewandowski wins The Best: the arguments to beat Messi as he couldn’t in the Ballon d’Or

That Robert Lewandowski has not won the Ballon d'Or 2021 represented an injustice for many football lovers. ...

Must read

You might also likeRELATED
Recommended to you