Born with a rare genetic disorder, this little boy’s life has been a relentless battle against severe developmental delays, intellectual disabilities, and critical health complications.
Despite the odds stacked against him, his will to survive continues to shine through. But his journey relies on the compassion of people, and now, he needs more Malaysians to rally together once again.
Shao Heng’s condition, caused by a rare chromosome abnormality, has led to multiple life-threatening complications, including brain defects, congenital heart issues caused by a hole in the heart and an interrupted aorta. The little one also suffers from gastrointestinal issues and throat dysfunction.
As a result, he cannot stand or walk, and relies entirely on a feeding tube for nourishment.
Given up by his parents at birth in 2020, the boy was entrusted to the care of Persatuan Kebajikan Sayap Kasih Malaysia (formerly known as Persatuan Kebajikan Jian An and the Malaysian Association for the Welfare of Mentally Challenged Children).
Since then, he has been living at the association’s home on Jalan Gasing in Petaling Jaya.
Ben Wong, a social worker at the NGO, shared that since his birth, the boy has spent much of his life being shuttled between hospitals and rehabilitation centres. Wong said that despite the child’s fragile health, he has shown incredible perseverance.
Years of intensive medical care have enabled him to achieve small but meaningful milestones – briefly lifting his head, maintaining a seated position, and turning over.
“While these may seem minor, they are significant for a child in his condition,” Wong said. However, his development remains far behind children his age, and he requires constant medical attention.
The NGO, which was established in 2012, is home to 70 residents – children and the elderly – who suffer from intellectual disabilities such as Down syndrome, cerebral palsy, and autism.
Shao Heng’s ongoing medical needs have placed a tremendous financial strain on the association. His care includes regular hospital check-ups, physiotherapy, speech therapy, 24-hour professional nursing, and essential supplies like specialised milk formula, diapers, and feeding tubes.
The association’s care for this one boy alone amounts to approximately RM5,285.28 per month, totalling over RM63,000 annually.
Wong shared: “Our resources are nearly depleted and interrupting his care would be devastating, potentially life-threatening.”
With the new year coming around, the association urgently needs to raise RM63,500 to support the child’s essential medical expenses and daily care for 2025.
Although FMT published a story in October 2022 to raise funds for him, the association now finds itself in need of public support once again.
“Your generosity can make a significant difference in little Shao Heng’s life and give him a fighting chance against the illness that have consumed so much of his young life,” Wong expressed. “We humbly appeal to you to extend your helping hand.”
He added: “We firmly believe that every life is precious and deserves to be cherished. Together, let us create a brighter, more loving world for this brave little boy.”
Contributions can be made directly to Persatuan Kebajikan Sayap Kasih Malaysia, Ambank account number 8881060 991 545.
Please reference ‘Shao Heng’ in your transaction, and WhatsApp a copy of your receipt or email it to [email protected]. For more information, contact Ben Wong at 010-2387072.
Persatuan Kebajikan Sayap Kasih Malaysia
118, Jalan Gasing,
46000 Petaling Jaya, Selangor