Every day, he takes 15 different medications just to keep going. For him, this isn’t a temporary challenge but a lifelong medical battle that began the day he was born.
Hao Hin lives with a rare developmental and epileptic encephalopathy – conditions that result in brain disorder – caused by a genetic defect.
It affects almost every part of his life: it can trigger tics and seizures, cause intellectual disability, and lead to autistic traits and structural abnormalities in the brain.
Because of this, he cannot speak, sit, walk, or stand on his own. But the most difficult part is the constant discomfort – he experiences severe acid reflux whenever he eats, twisting his small frame in pain.
What may look like “twitching” is really involuntary muscle contractions – a little boy silently fighting his way through another wave of agony.
His daily “survival list” includes multivitamins, sleep medication, anti-epileptic drugs, muscle-tone regulators, and gastrointestinal treatments. Yet somehow, through all of this, Hao Hin manages to smile and is always cooperative when taking his medication.
It’s a gentle smile, but also a determined one – his own way of resisting the fate he never chose.
Hao Hin’s parents – who hail from Ipoh, Perak – now have the help of Persatuan Kebajikan Sayap Kasih Malaysia (formerly known as the Malaysian Association for the Welfare of Mentally Challenged Children), who are interceding to raise funds for the family.
To support his ongoing treatment and basic needs, the NGO has set a fundraising target of RM32,000. The funds will cover medical bills, therapy sessions, 24-hour caregiving, special formula milk, diapers, nutritional supplements, and essential medical supplies such as feeding tubes.
According to social worker Jesslyn Tan, fundraising efforts began on Nov 17. As of Dec 11, about RM26,000 has been raised.
Persatuan Kebajikan Sayap Kasih Malaysia hopes to raise the remaining RM6,000 to help ensure a brighter future for Hao Hin.
A small gesture from the public – a donation, a share, or even simply spreading the word – could help lighten the load for this brave boy and his family.
If you wish to donate, contributions can be made directly to Persatuan Kebajikan Sayap Kasih Malaysia, Ambank account number 8881 0609 91545.
Please reference ‘CASE 64’ in your transactions. Kindly email a copy of your receipt to [email protected] or send it via WhatsApp to Jesslyn Tan at 016-2166950.
For further information, visit Persatuan Kebajikan Sayap Kasih Malaysia’s Facebook profile.
Persatuan Kebajikan Sayap Kasih Malaysia
118 & 120 Jalan Gasing,
46000 Petaling Jaya, Selangor