What happened to Baby Lucas?
At just 2 months old, Lucas was diagnosed with Spinal Muscular Atrophy (SMA) Type 1 – a genetic neuromuscular disorder that progressively weakens and damages muscles over time, affecting the brain and spinal cord. Such damage is irreversible.
The recommended treatment for Lucas is Zolgensma, a gene therapy designed to target the genetic root cause of SMA by replacing the function of the missing or nonworking survival motor neuron 1 (SMN1) gene. This treatment will stop SMA from further damaging his muscles and sustain the remaining muscle function needed to survive.
Priced at SGD2.4 million, Zolgensma is also known as the world’s most expensive medicine. Unfortunately, Zolgensma is not subsidised by the government, nor is SMA treatment covered by the Rare Disease Fund in Singapore. Therefore, patients are required to fund it independently. With his muscles deteriorating every second, it is a race against time to get him the treatment before more damage is done.
The doctors have prescribed a temporary medication, Risdiplam for Lucas which costs SGD9,000 and lasts only 64 days.
How can you help?
Due to the urgency of Lucas’ condition, his parents have ordered the Risdiplam drug ($9000/bottle after subsidies) while 2.4 million is being raised for Zolgensma.
SGD2.409 million is a sum that’s beyond what his parents can afford. They hope to raise the amount for Lucas to receive treatment ASAP.
100% of the funds raised will be paid directly to the hospital under the supervision of Ray of Hope.
Personal appeal letter from parents of Lucas – Andy and Lavin:
“By 2 months, your baby may have put on a lot of weight and may be looking round and chubby. As their muscles develop, their arms and legs start to move more freely, stretching out to make them seem taller and leaner.” At least, that’s what Google has been telling us.
As first-time parents, my husband and I kept a watchful eye for those joyful milestones. But something was amiss as we reached the 2nd month. Our infant son didn’t seem to enjoy using his legs. He didn’t stretch or kick. Lucas didn’t seem as active as other babies when we peered into other parents’ prams. We needed to understand. Was there something wrong?
By his 9th week, we decided to check-in with the doctors. We thought the doctors would put our minds at ease. Instead, our hearts sank when we saw the unexpected reactions of the doctors. Without delay, the doctors hurriedly did a flurry of tests, poked and prodded our son.
By 26 June 2023, the results confirmed our greatest fear. Lucas was not only born with Spinal Muscular Atrophy (SMA), but was a Type 1 – SMA in its most severe and cruel form, with a life expectancy of only 2 years. SMA will relentlessly ravage his tiny muscles, denying him the simple pleasures we often take for granted—sitting, crawling, standing, walking, swallowing, and even breathing.
Our hearts broke. That’s the reason why Lucas’ legs were not kicking. And that’s why his head hangs to the side when he is tired.
Today, he depends on 2 temporary medical support to survive:
- Lucas has a nose mask connecting to a ventilator, with straps that go around his small head. The straps have to be taut so that the mask stays secure. But it dents into his delicate skin.
- He also has a feeding tube painfully inserted into his nose. Unlike other children, Lucas drinks his milk from his nose through the tube.
As parents, it pains us to see him like this. But in our hearts, hope persists that one day, he will run and race with other little boys at the playground. This very faith and hope motivates us to do whatever we can as his parents.
There is a treatment called Zolgensma that can save Lucas’ life. However, the cost of SGD 2.4 million is a staggering sum beyond our means.
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.
Each donation and act of sharing brings us closer to securing the necessary treatment Lucas urgently needs. Your generous contribution, regardless of the amount, holds the power to make a life-changing difference for our baby. We are immensely grateful for any support you can provide.
Additionally, we kindly request your assistance in sharing our campaign with your friends and family. If you know of any organisations, communities, or sponsors who may be willing to lend their support, we would be deeply grateful if you could reach out to us at HopeforBabyLucas@gmail.com.
Follow us on Instagram (@hope_for_baby_lucas) and on Facebook ‘Hope for Baby Lucas’, for updates on Lucas’ progress and his journey with SMA.
From our hearts, we express our sincere gratitude for your consideration, support, and the hope you offer our son. Every contribution, be it financial or by spreading the word, brings us closer to giving Lucas a chance to experience a full and vibrant life. Thank you for being a beacon of hope in our darkest hour.
Yours,
Lucas, Lavin and Andy
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We are deeply grateful to Ray of Hope for coming to our aid. As a crowdfunding charity, they will handle all the payments directly to the hospital, so you can be sure the funds are going directly to Lucas’ treatment. In addition, Ray of Hope does not take a cut from the donations, and 100% of your donations will go to Lucas’ treatment.
From Ray of Hope
Baby Lucas’ campaign has been verified by Ray of Hope case managers. We sighted doctors letters stating the above mentioned treatment options and have also verified with the physician treating Lucas.
Donors who give to the first SGD 9,000 of the campaign will be donating to fund Risdiplam. Donors who give after the SGD 9,000 target has been reached will be contributing to the purchase of Zolgensma.
Please donate generously to give Baby Lucas hope and a second chance at life. 100% of your donation will be used for his treatments.
Ray of Hope Team
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FAQ
There was a similar campaign on Ray of Hope where the cost of Zolgensma was higher. So why is it lower this time?
For both campaigns, Ray of Hope receives the cost of treatment directly from the hospital. As at April 2023, Zolgensma has been registered, bringing the cost down to SGD2.4 million.
How will the funds be used, and where will the funds go?
The donations made through the campaign page go directly to Ray of Hope. Ray of Hope will handle the donations received and pay for the cost of treatments.
What happens if there are insufficient funds for Lucas’ treatment?
Ray of Hope will provide an option for refunds to all donors within a reasonable timeframe, minus any administrative costs incurred during the refund process. These admin costs are from the payment gateway, not Ray of Hope.
What happens if Lucas passes on before receiving the treatment?
- If funds have not been transferred to the hospital for the treatment, Ray of Hope will provide an option for refunds to all donors within a reasonable timeframe, minus any administrative costs incurred during the refund process. These admin costs are from the payment gateway, not Ray of Hope.
- If funds have been transferred, ownership of funds is now with the hospital. Ray of Hope will not be able to process any refunds.
How can I donate?
All donations shall be made via this campaign page which gives you the option to donate via Credit Card or via Paynow by scanning the unique QR code generated for the campaign.
Kindly refrain from directly donating to ROH’s UEN via Paynow as we are unable to track your donations to the campaign you wish to donate.
Does Ray of Hope take a cut or charge an admin fee for running this campaign?
Ray of Hope does not take a cut from donations nor charge an admin fee for helping our beneficiaries. We even cover the bank and credit card charges we incur so that 100% of your donation goes to the campaigns. These fees can come up to 3% of the overall campaign target.
However, as donors, you may choose to give to Ray of Hope so we can continue to help more beneficiaries like Lucas at the checkout page. This donation is optional.
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