Ooi Man Lee is a chatty, lively, and cute six-year-old girl. It is difficult to tell that she is an SMA patient.

Man Lee from Alor Setar, Kedah, was normal when she was born. She could roll over, crawl and sit like the other children. However, in 2020, when Man Lee was two, her mother discovered that the toddler could not lift her feet when going up the stairs and could not balance when walking. She fell often and had knock knees. Therefore, the parents took her to the hospital for treatment. The hospital referred her from the paediatric department to orthopaedics and then to the neurology and medical genetics department. After repeated tests and examinations, the doctor diagnosed little Man Lee with a rare genetic disease – mild childhood Spinal Muscular Atrophy (SMA type III), in which her lower body will gradually atrophy.

Due to a lack of information and medicine, her parents did not let little Man Lee take Spinraza until last year. She has slowly learned to walk after taking the medicine for a year. Although her walking is not stable now, she can already walk for 100 metres without falling. Everything is developing in a good direction, and her parents are overjoyed. However, they have exhausted their savings to treat their daughter, so they are seeking help to raise RM104,800 for her medication expenses for a year.

【As little Man Lee did not receive any treatment earlier, her lower body started to have mobility problems. She could only sit, could not crawl, and would fall after walking a few steps. If she does not receive treatment, her muscles will gradually atrophy and become paralysed】

Man Lee was initially referred to an orthopaedic department for a diagnosis of flat feet due to her unbalanced walking problem. Later, the doctor referred her to the neurology and a medical genetics department. After three years of various tests, the doctor diagnosed her with SMA type III. At that time, the doctor told me that there were three types of medication for this genetic disease, but these medications were not available in Malaysia. Her parents were helpless and at a loss.

In July 2023, Spinraza was finally available in Malaysia. The doctor suggested the parents let little Man Lee try the medicine. If the medicine was effective, it could help to delay the deterioration of her condition. In October last year, her parents exhausted their savings and borrowed money so that their daughter could try the medication. Thankfully, after starting the medication, Man Lee can now walk 100 to 200 metres without falling. Moreover, she can walk down steps with a height of 10 centimetres or less. The current physiotherapy sessions allow her to learn to go up and down stairs. Without the injection of Spinraza, she would gradually become weak and eventually need a wheelchair for life.

Her 41-year-old father, Ooi Ken Soon, is a CCTV supplier, earning RM3,000 monthly. His 37-year-old wife, Jo Lyn Janakun, is a Thai Chinese. She helps her husband in managing the account and receives RM3,000 monthly. The couple has an eight-year-old son. They are unable to afford their daughter’s medical expenses, so they seek help.

After reviewing the case following a home visit, One Hope Charity decided to assist little Man Lee in raising the medical expenses she needed. Her parents agreed to fully authorise One Hope Charity to take charge of the fundraising and collect donations from the well-wishers on their behalf.

One Hope Charity also allocated RM10,000 from the “Emergency Medical & Contingency Reserve Fund” to assist Ooi Man Lee. If you have questions or intend to donate, call One Hope Charity’s hotline at 04-539 9212, 016-419 2192, 019-232 2192, or 018-911 4192.