KUALA LUMPUR: Ooi Man Lee, 5, faces unique challenges due to movement limitations. She requires support in navigating her daily activities.
Diagnosed with spinal muscular atrophy type II, a condition characterised by muscle weakness and mobility constraints rooted in an underlying genetic disorder, Ooi faces a gradual decline in her ability to stand or walk on her own.
This often leads to dependence on a wheelchair as the condition progresses.
Ooi's mother, Jo Lyn Janakun, 36, said her daughter's journey has been a difficult one.
She said her child receive the diagnosis for her condition when she was a year-old.
"We sought medical advice when she was around 13-months-old because her legs suddenly became bent.
"Ooi's condition impedes her from running or walking like other children her age. Her body sways, necessitating assistance from others to facilitate her movements.
"This paints a poignant picture of the challenges she has to endure daily," said Jo Lyn.
She said Ooi's condition could be treated via gene therapy, which is a breakthrough treatment that offers hope for improved mobility and a higher quality of life.
Like any parent, Jo Lyn dreams of seeing Ooi live a life without the need for constant assistance.
"I hope that after she undergoes treatment, she can become independent and take care of herself without relying on others for help.
"At times, she feels sad about her condition. She has asked why she cannot run like other children.
"She feels envious seeing others play. But we are hesitant to let her go and play, fearing she might face rejection."
Gene therapy is administered directly to the central nervous system through an intrathecal injection.
Ooi's hospital costs for this treatment is estimated at about RM50,000.
Those who wish to help Ooi may send cheques made payable to the Media Prima-NSTP Humanitarian Fund to the Group Corporate Communications Department, Media Prima Bhd, Level 1, Anjung Riong, Balai Berita, 31 Jalan Riong, 59100 Bangsar, Kuala Lumpur, with the patient's name written on the reverse side of the cheque.
The public may donate to the Media Prima-NSTP Humanitarian Fund through the Bank Muamalat account number 1401 0008 8427 18 or Maybank 5141 0532 3170.
Donations to the Media Prima-NSTP Humanitarian Fund are tax-deductible.