Case No. 2359: 13-year-old twin brothers CHIN CHUN HONG and CHIN CHUN LOK were born with numerous brown patches on their bodies. This was not an ordinary skin condition.
As they grew older, their skin became covered with spots and patches of different sizes while also remaining persistently dry and prone to peeling. From their foreheads, behind their ears, cheeks, backs, shoulders, palms, and knees, all the way to their toes, signs of the condition could be seen.
At the age of 4, doctors confirmed that CHIN CHUN HONG had Neurofibromatosis Type 1 with severe Intellectual Disability. His twin brother, CHIN CHUN LOK, was also diagnosed with this condition, although his symptoms were less severe.
【One challenge after another on their journey of growing up.】
Neurofibromatosis is a condition that requires long-term monitoring and care. It not only affects their skin but also their growth and development. Even at the age of 4, the brothers were still unable to walk, leaving their parents deeply worried.
Over the years, one challenge after another arose. When the elder brother was 9, he began experiencing seizures. Last year, he also developed psoriasis and now requires long-term medication and topical treatment. Doctors said his recovery could take as long as two to three years.
The younger brother, meanwhile, has severe eating difficulties, which is a major concern for his mother. He is willing to eat almost nothing except bread. Whenever his mother tries to feed him other foods, he keeps his mouth tightly shut and may even bite his lips until they bleed out of resistance.
To ensure that the brothers receive sufficient nutrition, their mother gives them milk.
【They still cannot move around independently.】
CHIN CHUN HONG still has difficulty walking steadily and needs someone to support him when going down the stairs. To prevent injuries, the family has laid soft mats throughout the living room to reduce the impact if he falls.
Their mother, CHEE SIEW WAI, 49 years old, shared that they had hoped to enroll the brothers in a government special education school so they could learn basic daily living skills. However, as both boys require one-to-one care, the school was unable to provide the necessary resources. With no financial means to send them to a private school, their mother had no choice but to stay home and care for them.
Their father, CHIN WAH ON, 58 years old, works as a renovation worker and is paid on a daily basis. His work is irregular and his income is unstable. Their mother, CHEE SIEW WAI, previously worked as a promoter, but after the twins were diagnosed with the condition, she had to resign from her job and has since become the brothers' strongest source of support.
Besides the twins, the family also has an 18-year-old son and an 11-year-old daughter who are still attending school. The family of six relies entirely on their father to make ends meet.
【Milk powder and diapers are essential.】
With the rising cost of living, their father can no longer afford the ongoing expenses of milk powder and diapers that the brothers require. The family therefore turned to us for assistance.
After reviewing the case, we have decided to raise funds to cover two years' worth of milk powder and diapers for CHIN CHUN HONG and CHIN CHUN LOK.
Fundraising breakdown:
FERNLEAF milk powder — RM35 × 100 packs (two years) = RM3,500.00
DRYPERS XXL Tape diapers — RM45 × 48 packs (two years) = RM2,160.00
Total: RM5,660.00
We sincerely appeal to the kind-hearted public to help and support them through this difficult journey. Your kindness will help these twin brothers grow up safely and give them the opportunity to experience a better quality of life. We also kindly ask you to share this appeal so that the brothers can receive support they need as soon as possible. Thank you.
