You may donate to Axel’s fundraiser via PayNow to +65 87777699 or use the QR code below
Zolgensma, a gene threapy treatment, is one of the most expensive drugs in the world. It is used to treat children with a rare genetic disease called spinal muscular atrophy (SMA). It is a one-time-only dose drug that costs a whooping 2.9 million Singapore Dollars.
LAST YEAR, WE ALL CAME TOGETHER FOR DEVDAN
Last September, in a span of 10 days, people of all walks of life came together to help Devdan raise 2.9 million dollars for his gene therapy treatment called Zolgensma. This was an amazing feat, which allowed Devdan to walk again.
On 25 September 2021, Devdan received his Zolgensma treatment under the care of the National University Hospital. In an interview with the Straits Times, Devdan’s mother said that, prior to tune fundraiser they could not imagine Devdan walking as even standing was an issue. Today, videos on Devdan’s Instagram page depict a brave and bubbly young boy who is, slowly but surely, able to walk again.
Having following Devdan’s journey from the start of the fundraiser, we must say that this was an unprecedented effort that all of us can be proud of. It literally made the impossible, possible.
NOW, IT IS TIME FOR US TO HELP AXEL LOUIE
Today, we write to urge all of you to show the same support and love to Axel Louie. Axel is a young boy who, like Devdan, suffers from SMA and is in dire need of Zolgensma. To date, he only has raised 30% of the funds required.
https://www.tiktok.com/@wakeupsingapore/video/7058530198223981825
He just turned 1 last week and, in at the top of his bucket list, is his desire to celebrate his second birthday. Most babies with Type 1 SMA do not live past age 2. Accordingly, time is of the essence here for Axel’s fundraiser.
Here’s a lovely picture of Devdan lending his support to Axel’s fundraiser. Devdan’s parents have been relentless in their calls to ask people to show Axel the same love that was shown to Devdan.
Without immediate treatment, Axel may lose his ability to eat, swallow, and breathe on his own. You may donate to Axel’s fundraiser via PayNow to +65 87777699 or use the QR code below:
Alternatively, you may also donate via any of the other methods set out here.
AXEL’S STORY
Axel was a first-born child who was born healthy. In just a couple of months, he learnt how to lift his head, “power-kicked” everyone and giggled at the smallest of things. However, after he was 6 months old, his parents started to notice some things. He couldn’t lift his head anymore, he stopped kicking, and he didn’t learn how to roll over.
After countless tests, Axel was diagnosed with SMA (Type 1). Put simply, he did not have the necessary gene (SMN1) that would allow him to learn how to improve and develop muscle function and movement. Without timely medical intervention, Axel may lose his ability to eat and breathe on his own.
Doctors are clear in their opinion that what Axel needs urgently is Zolgensma. The life changing “miracle” treatment would give him the SMN1 gene that he needs. Zolgensma, coupled with therapy and Axel’s unyielding spirit, should be able to help Axel recover.
Currently, Axel’s lower limbs are becoming weaker everyday and he takes about 2 hours to swallow 120ml of milk.
The faster Axel receives his treatment, the higher Axel’s chances are to regain and retain his muscle functions. There is a real urgency in this fundraiser, so we hope you can help to contribute and share this with your friends and family.
Petition to reduce price of Zolgensma
In recent weeks, both Devdan and Axel have shared links to a petition that calls for the price of Zolgensma, the life-saving drug, to be lowered. To date, more than 132,000 people have signed the petition.
The petition notes that Type 1 SMA is a “the most common and aggressive form of SMA” that causes “many newborns die within months while most other children do not live past age two”. It also speaks about how Zolgensma is simply out of reach for many suffering babies as delayed accurate diagnosis and treatment leave parents with little time to raise sufficient funds.
The petition argues that the price of Zolgensma should be tied to the safety and effectiveness of the drug:-
In May of 2021, Zolgensma entered the third year of being sold at the $2.1 million price tag, unlike any other sophisticated drugs for rare diseases.
Novartis AG, reduce the universal drug price of $2.1 million for Zolgensma by tying the safety and effectiveness of the drug to its pricing. Consider all generous incentives received by the F.D.A., not its fast-producing profit. Not only will that shorten the time of raising sufficient financial funds and assess the price of Zolgensma properly but will also save more babies! According to ICER, “Zolgensma’s price for Type I patients would need to be between $710,000-$1.5 million per treatment.” Once the price is reasonably reassessed, more countries will cover the treatment of Zolgensma ending ultimately the pain of afflicted families.
If you agree that life-saving medicine should not be priced exorbitantly, please sign the petition too.
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