“When we learned that our only daughter was ill, we were shocked, and it was difficult for us to accept the fact. We hope that she can grow up healthily!”

Ten-year-old Lee Khai Ern from Klang, Selangor, went for medical treatment two years ago due to her strange walking posture and abnormally slow speed when climbing stairs. The doctor then discovered that her spine was curved by 20 degrees. At that time, the doctor recommended that she wear a brace. Unexpectedly, her condition did not improve. Two years later, the curve in her spine increased to 58 degrees, which shocked her parents.

Since the girl had not yet reached puberty, the doctor told her that she needed to correct her spine first. After that, she needs surgery to loosen the screws every six months to allow the bones to grow until she is 15 or 16 or when she is fully grown. After that, the girl will need a last spinal correction surgery. However, the treatment needs a substantial amount of surgical expenses. Her parents can only afford RM30,000. Hence, they seek help for the shortfall of RM165,000.

【The girl had breathing difficulty last year and turned cyanotic/ After seeking medical treatment, the doctor confirmed that she had a rare hereditary neuromuscular disease. Due to muscle weakness, she had scoliosis and needed to wear a ventilator at night】

When little Khai Ern was seven, the doctor diagnosed her with scoliosis of over 20 degrees and recommended that she wear a brace. However, she did not continue to wear it for nearly a year as it was uncomfortable. During a regular follow-up examination, the doctor found that the curve in her back had worsened from 41 degrees last year to 58 degrees this year. The doctor informed her that she needed surgery.

Little Khai Ern not only has scoliosis, but in July last year, she suddenly had difficulty breathing and cyanosis while sleeping. After seeking medical treatment, the doctor referred her to the genetic department for testing, which confirmed that the combination of her parents’ genes caused her to suffer from a rare genetic disease called Nemaline Myopathy (NM).

NM is a congenital, usually hereditary neuromuscular disease with varying symptoms and severity. Common symptoms include muscle weakness, insufficient ventilation, swallowing dysfunction and impaired language ability. The prevalence is estimated to be one in every 50,000 live births.

Fortunately, little Khai Ern only has muscle weakness and can still move. She has no problem with swallowing, and her language and IQ are also standard. She must wear a BIPAP to assist her breathing and sleep at night. Although she walks unsteadily, she can attend ordinary primary school. Her parents requested that the school allow her to use a classroom on the ground floor, and the school cooperated, and several arrangements permitted the girl to live a normal life.

Khai Ern’s medical condition was due to Neuromuscular Scoliosis with underlying Nemaline Myopathy, and now, the scoliosis is getting worse. If she does not undergo surgery in time, the curve in her back may compress the internal organs. Therefore, she needs urgent surgery to prevent the condition from worsening. Her parents cannot afford the substantial medical expenses, so they seek help.

The girl’s 36-year-old father, Lee Weng Chong, is a spare parts repair technician, earning slightly over RM3,000 monthly. His 36-year-old wife, Lim Bee Ching, is an account clerk with a basic salary of RM2,850. Khai Ern is their only daughter. Although the doctor told the couple they could have more children, they were worried that 25% of their genes would affect the other children, so they would not have more children.

After reviewing the case following a home visit, One Hope Charity decided to assist in raising the surgical expenses the girl needed. Her family members agreed to fully authorise One Hope Charity to take charge of the fundraising and collect donations from the well-wishers on their behalf. Call One Hope Charity’s hotline at 04-539 9212, 016-4192 192, 019-232 2192, 018-911 4192 if you have questions.