Three-month-old baby Lucas, born to parents Andy Wang and Lavin Chong, has been diagnosed with Spinal Muscular Atrophy (SMA) Type 1, a severe genetic disorder that weakens muscles and affects the brain and spinal cord. At just two months old, Lucas’s muscles are deteriorating rapidly, and time is of the essence to provide him with life-saving treatment.
Urgent Medical Care Required for Rare Genetic Disorder Treatment
Lucas’s parents noticed early signs of his condition when he didn’t exhibit the expected developmental milestones. Concerns grew as they observed his decreased activity and difficulty stretching and kicking. Lucas’s head also hung to the side when tired, prompting Chong and Wang to seek medical attention for their son. On June 26, the devastating news arrived that Lucas’s life expectancy had been reduced to a mere two years.
Currently, Lucas relies on crucial medical support, including a nose mask connected to a ventilator and a feeding tube inserted into his nose for nutrition. Additionally, he requires Risdiplam, a temporary medication that costs SGD9,000 per bottle and lasts only 64 days.
The World’s Most Expensive Drug
To provide Lucas with a chance at a longer life, his parents are urgently seeking treatment with Zolgensma. This groundbreaking gene therapy targets the root cause of SMA, aiming to replace the function of the missing or nonworking survival motor neuron gene. By halting further damage to Lucas’s muscles and sustaining the remaining muscle function necessary for survival, Zolgensma offers a glimmer of hope. However, with a staggering price tag of SGD2.4 million, the cost of the drug is a significant hurdle for the family to overcome.
Crowdfunding Campaign for Lucas’s Rare Genetic Disorder Treatment
Understanding the urgency of their son’s condition, Chong and Wang have established a crowdfunding campaign under Ray of Hope to raise funds for Zolgensma. The financial burden of the treatment exceeds their means, making the collective support of the community vital. They will allocate the initial donations received to fund Risdiplam, while they will direct subsequent contributions towards purchasing Zolgensma.
Expressing their deep appreciation, the couple emphasizes, “Let’s rally together and support Lucas on his journey of discovery. Your contribution will not only help him grow but also inspire him to embrace the wonders of life. Thank you for being a part of Lucas’s incredible journey.”
Bringing Hope to Baby Lucas
While Lucas bravely battles his rare genetic disorder, his parents remain hopeful for a brighter future. They provide regular updates on Lucas’s progress through their Instagram and Facebook pages, grateful for the overwhelming support and the potential of life-saving treatment for their beloved son.
By joining forces and contributing to the crowdfunding campaign, we can make a difference in baby Lucas’s life and bring hope to other families facing genetic disorders. Moreover, together, let us give Lucas a fighting chance at life. Furthermore, please donate and share this post to help raise awareness and support for his urgent medical treatment.
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