Case No. 2399: A rare disease has robbed her of her ability to walk, speak and eat. To help this brave young girl maintain her basic daily needs, she urgently requires kindness and support from the public.
She requires RM8,828 to purchase six months’ worth of medical nutrition and care supplies, including a gastrostomy feeding tube, specialised formula milk and diapers. We sincerely appeal to kind-hearted members of the public to extend their generosity and support.
[From an active little girl to a child who can no longer stand.]
Her father, Heng Boon Shinn (45 years old), recalls that before the age of six, Jie En was just like any other child. She happily went to school and played every day, bringing joy to the entire family.
However, her parents gradually noticed that she frequently fell while walking, sometimes sustaining head injuries that required stitches on multiple occasions. Then, after one particular fall, she could no longer stand up again.
Following medical examinations, Jie En was diagnosed with an extremely rare genetic neurodegenerative disorder known as Pantothenate Kinase-Associated Neurodegeneration (PKAN).
As her neurological and physical functions continue to deteriorate, her muscles have become severely stiff, with involuntary twisting movements. Her speech is unclear, and she now depends entirely on her parents for all aspects of daily living.
[A girl who can no longer eat and needs formula milk every four hours.]A
Jie En is no longer able to eat normally. To prevent choking and infection, she can only receive specialised formula milk through a gastrostomy feeding tube. Every four hours, her family carefully prepares the formula and slowly administers it through the tube.
What was once an ordinary mealtime has now become a tremendous challenge. Her mother, Kok Sook Kuan (45 years old), has given up working to care for her daughter full-time, while her father works as a Grab driver to shoulder the financial burden of the entire family on his own. Faced with prolonged and costly medical expenses, the family is physically and emotionally exhausted, yet they have never considered giving up.
[Please help this little girl who is doing her best to live.]
Unable to cope with the overwhelming expenses of caring for their daughter, Heng Boon Shinn and his wife have turned to us for assistance.
After reviewing their case, the platform has decided to launch a fundraising campaign to help Jie En obtain the medical nutrition and care supplies she needs for the next six months, amounting to RM8,828, as detailed below:
- Specialised formula milk — PEDIASURE (RM168 × 36 tins): RM6,048
- Diapers — MAMYPOKO EXTRA DRY TAPE (RM45 × 36 packs): RM1,620
- Mic-key Gastrostomy Feeding Tube: RM1,160
Children cannot choose the circumstances they are born into, but we can bring warmth and hope into their lives. Every donation you make and every time you share this appeal can help ease the burden on this family and enable Jie En to continue living each day with the care and support she desperately needs. Thank you.
