SINGAPORE: In July of this year, the desperate parents of a three-month-old baby named Lucas launched a crowdfunding campaign on the Ray of Hope platform, seeking public assistance to raise S$2.4 million for the treatment of their baby, who has been diagnosed with a rare genetic disorder.
Lucas has been diagnosed with Zol (SMA) Type 1, a genetic neuromuscular disorder that progressively weakens and damages muscles over time, affecting both the brain and spinal cord.
Regrettably, Lucas requires the Zolgensma treatment, priced at S$2.4 million, which is not subsidized by the government. This staggering sum is far beyond the means of Lucas’s parents, Andy and Lavin, who have referred to it as ‘the world’s most expensive drug’.
“Thus, we are humbly turning to the compassionate community for help. We know that this is a big ask and an ambitious goal. But as parents, we must do everything we can to give our son a fighting chance at life.”
Fortunately, the crowdfunding campaign was a success.
Ray of Hope posted an update on Facebook on 18 July, stating that within just 12 days, 21,458 donors came together to reach the targeted crowdfunding amount.
This achievement has brought renewed hope for Baby Lucas’s treatment, and the funds collected have been directly transferred to the hospital to cover the medical costs.
Lucas’s parents expressed their heartfelt gratitude to the members of the public, stating that they were overwhelmed with profound appreciation and more.
“This is life-changing for Lucas and us. Thank you so much for your support, contribution, encouragement, and prayers. We thank you from the bottom of our hearts. Every donation has given Lucas a new lease of life and hope. It means our son will soon live without his feeding tube or ventilator. ”
“It means he will soon live a full life like all children should. We are beyond words. We are eternally grateful.”
Lucas admitted to hospital to undergo life-changing treatment
On Wednesday (2 Aug), the parents shared a significant update on the ‘Hope for Baby Lucas’ Facebook page, informing that Lucas had been admitted to KK Women’s and Children’s Hospital to undergo the life-changing Zolgensma treatment.
Witnessing the remarkable courage of young Lucas as he undergoes a necessary medical procedure, the parents said their hearts are deeply moved as nurses gently prepare him for an ECG and treatment, his tears tugging at their heartstrings.
“To each and every one of our amazing donors, we cannot thank you enough for your selflessness and belief in Lucas’ journey. Your support has given him hope and a chance at a brighter tomorrow. We are eternally grateful for your presence on this incredible journey.”
The parents expressed their commitment to keeping the public and netizens updated on Lucas’s progress as he continues his treatment.
According to a report from Chinese media outlet Lianhe Zaobao, Lucas’s mother shared that he was remarkably well-behaved and cooperative throughout the injection process, resulting in a smooth and successful treatment.
While the Zolgensma medication carries a high cost, it requires only a single dose. The medication was imported from the United States to Singapore, making it crucial to administer the injection within a two-week timeframe.
Over the past few days, the parents have exercised utmost caution, as doctors prioritized ensuring the baby’s overall health and preventing any potential infections before administering the injection.
The mother noted that the baby was admitted to the hospital on Monday (31 July), initially scheduled to receive the injection treatment the following day.
However, due to the baby experiencing mild diarrhea, the treatment was postponed for a day as a precaution.
One-hour injection treatment was successfully completed
Finally, on Wednesday afternoon, the one-hour injection treatment was successfully completed. The doctors opted to observe the baby overnight, and if no issues arise the next day, he will be discharged.
Dr Jocelyn Lim Yi Xiu, the attending physician for baby Lucas and a neurology consultant in the Pediatric Department of KK Women’s and Children’s Hospital, conveyed to Lianhe Zaobao their delight in finally being able to provide the long-awaited gene therapy for the baby.
“Over the next two to three months, we will closely monitor his condition, paying particular attention to the medication’s effects on his liver, heart, and platelets.”
“Seeing the joy on the faces of baby Lucas’s parents, our entire team feels a strong sense of purpose and finds this work especially meaningful.”
Other parents who also had to sought crowdfunding for their kids dignosed with the rare genetic disorder
In April 2023, The Online Citizen reported that another 19-month-old baby, Pilapitiya Shamel Adrian, also diagnosed with SMA when he was 14 months old, raised a fund of S$3 million to secure the one-time gene therapy drug Zolgensma.
A spokesperson from National University Hospital (NUH) revealed that Onasemnogene abeparvovec (Zolgensma) is a novel drug that was approved by the US Food and Drug Administration (FDA) in May 2019 as a one-time gene therapy for children.
In November 2022, The Straits Times reported that the parents of a five-month-old boy with SMA type 1 had just managed to raise $3 million through crowdfunding for his treatment.
Available in Singapore only via the Special Access Route – which allows for unregistered life-saving drugs to be imported into the country – it is often touted as the most expensive drug in the world, costing almost $3 million.
A written reply from Singapore Health Minister Ong Ye Kung in March 2023 to a Parliamentary question filed by Louis Chua, Member of Parliament for Sengkang GRC, revealed that about 40 to 50 persons in Singapore are currently diagnosed with SMA.
Risdiplam is the only treatment option registered with and approved by Health Science Authority (HSA), and It costs around S$375,000 a year in Singapore’s public healthcare institutions.