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S’porean parents launch crowdfunding campaign to buy world’s most expensive drug Zolgensma for baby with SMA

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3 years ago

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Parents of a two-year-old baby, Devdan D, launched a crowdfunding campaign with Ray Of Hope to raise S$2.868 million for their son, who was diagnosed with Type 2 Spinal Muscular Atrophy (SMA), to get a one-time-only gene therapy treatment Zolgensma.

SMA is a rare condition that damages nerve cells in the brain and spinal cord, which may lead to progressive muscular weakness and trouble with activities – such as breathing, speaking, swallowing, and walking – if left untreated.

According to the crowdfunding campaign page, Devdan will be turning two years old in October this year.

“He is imaginative, has a great attention span and can play independently on his own,” the campaign page reads.

It stated that Devdan’s parents are working with crowdfunding charity Ray Of Hope to raise S$2.868 million and hope to achieve it by 1 September, so that Devdan can be treated with Zolgensma.

The gene therapy is said to be the most expensive drug in the world valued at USD2.125 million per patient.  It will help Devdan improve muscle strength and increase survival with minimal deterioration.

Though there are two other alternatives for Devdan – daily oral medication and intrathecal injection every month for the rest of his life – his parents believe that Zolgensma can be more cost-effective in the long run.

“As parents, we want the very best for Devdan and for him to lead a life as ‘normal’ as possible. However, the staggering cost of Zolgensma is posing a huge challenge,” said the parents.

The crowdfunding campaign has raised about S$1,258,675 at the time of writing.

It noted that the donations will be channelled directly to Ray of Hope’s bank account, which will then pay the hospital directly for the cost of treatment. The hospital requires one month to process the paperwork and to bring the drug to Singapore.

“In the unfortunate case that we are unable to raise sufficient funds for Devdan’s treatment, we will work with Ray of Hope to allocate the donations received to support other ongoing campaigns on Ray of Hope’s website.

“Donors will also get a choice to request for a refund on their donation. The refund request will have to be made by a stipulated date after the closure of the campaign,” it stated.

Members of the public who wish to make donations, or find more information about the campaign can do so here.

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Part of Marine Parade experiences flooding after water pipe damage

Flooding occurred in Marine Parade on Friday morning (4 October) after a water pipe was damaged during lift retrofitting works near Block 67 Marine Drive. MP Dr Tan See Leng confirmed repairs are ongoing, with no disruption to water supply. Road access was restored later in the day.

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2 hours ago

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4 October 2024

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SINGAPORE: On Friday (4 October), parts of Marine Parade, including Marine Drive and Still Road South, experienced flooding following the damage of a water pipe.

The incident occurred at approximately 11.40 am during lift retrofitting works at the pedestrian overhead bridge near Block 67 Marine Drive.

Videos shared on social media show floodwaters extending onto surrounding roads.

Dr Tan See Leng, Manpower Minister and also a Member of Parliament for Marine Parade GRC, in a Facebook post confirmed that a damaged pipe led to water flowing onto Still Road South and nearby HDB blocks.

Dr Tan said the damaged water pipe has been isolated, and repairs are currently underway, with no disruption to water supply for local residents.

Staff at the Marine Parade Community Centre are in the process of restoring counter services, having previously faced difficulties accessing the area due to flooding.

Dr Tan noted that contractors from the Land Transport Authority (LTA) are collaborating with the Marine Parade Town Council to clean the affected region, aiming to complete the cleanup by Friday evening.

In an update posted at 4.53 pm, Dr Tan announced that road access along Still Road South had resumed, expressing gratitude to PUB, the Marine Parade Town Council, and the dedicated workers for their swift action in clearing the area just in time for peak hour traffic.

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WMP raises over S$1,600 in a day to help struggling family clear outstanding water bill

Workers Make Possible (WMP) raised over S$1,600 in a single day to assist a struggling family living in a rental flat. The family’s water supply was reduced due to an outstanding S$900 bill. The mother has been severely ill for months, unable to work, leaving her husband, who earns less than S$2,000 per month after CPF deductions, as the sole breadwinner.

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1 day ago

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3 October 2024

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SINGAPORE: A struggling family living in a rental flat had their water supply reduced on 1 October, as revealed in an Instagram post by the workers’ rights advocacy group, Workers Make Possible (WMP).

In an effort to ease the family’s burden, a fundraiser was launched. By the evening of 1 October, S$1,620 had been raised.

Of this amount, S$1,200 was transferred to the family to fully clear their outstanding water bill and address other urgent expenses.

The family, which had been accumulating water bill arrears for several months, was informed by SP Group that their water supply would only be fully restored if they paid S$450 upfront—half of their total outstanding bill of S$900.

According to WMP, the mother of the family has been severely ill for months, leading to her inability to work.

As a result, her husband, who earns less than S$2,000 per month after CPF deductions, is the sole breadwinner for the family, which includes young children.

With the rising cost of living in Singapore, the family has struggled to manage household expenses, leading to unpaid bills, WMP shared in the post.

After contacting SP Group, the mother was told the water supply would resume if half of the arrears were paid. However, she could not afford the required S$450.

This situation occurs amid rising water prices in Singapore.

The government raised the price of water by 20 cents per cubic metre this year, with an additional increase of 30 cents planned for next year.

WMP argued that despite government subsidies, many low-income families continue to struggle to cover their basic utility bills.

“Subsidies offered by the government don’t come anywhere close to alleviating the struggles of poor families in paying these bills. PUB earned about $286 million in 2021,” WMP challenged.

To support the family, Workers Make Possible organised a fundraiser via PayNow. In a 5:30 pm update on 1 October, WMP announced that S$1,620 had been raised.

Of this amount, S$1,200 was sent to the family to clear their water bill, while the remaining S$420 will be used to assist a young warehouse worker struggling with illness and rent payments, WMP clarified.

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