"Watching our child frequently going in and out of hospitals, having injections and blood tests without any clear diagnosis, is incredibly painful. Ultimately, he was diagnosed with a rare genetic disease, and the doctor confirmed that it is not hereditary, but rather a genetic mutation in the child himself. We are out of options and can only do our best to treat him. We humbly appeal to the public for help."

3-year-old Izogner Chew Yoshua, from Ampang, Selangor, was born healthy but has been frail and sickly, requiring regular medication. In November of the year before last, he began to experience repeated coughing leading to hypoxia, which greatly alarmed his parents. After emergency medical treatment, the initial suspicion was COVID-19. After recovery, further tests revealed that he was suffering from pulmonary tuberculosis, but the treatment was ineffective. Doctors then suspected another cause and referred him for genetic testing. In August last year, he was finally diagnosed with Malaysia's first case of STAT3 Gain-of-Function Syndrome, an immune disorder caused by a rare STAT3 gene mutation.

The shocking news plunged this middle-class family into a difficult situation. The parents have exhausted their savings, and the mother has quit her job to take care of the child full-time. The family's financial situation is now strained, and they are unable to cover the cost of their child’s ongoing treatment. As a last resort, they are reaching out to the public for help, hoping to raise RM200,000 for the medical expenses.

【There are only 10 cases worldwide, and this is Malaysia’s first case of the STAT3 genetic disorder. The condition mainly causes overactive immune function and lymphoproliferative issues, leading to the child’s asthma, hypoxia, and the need for long-term use of a respirator. He also experiences skin sensitivity, frequent rashes, redness, and itching, as well as pale skin and loss of appetite】

3-year-old Izogner Chew Yoshua originally had a persistent cough, which later escalated to asthma, hypoxia, and cyanosis. A bacterial infection was found in his lungs, but after multiple tests and consultations, the doctors still could not identify the cause. His frequent visits to the hospital for injections and blood tests left the parents heartbroken.

The doctors suggested genetic testing, with only a 20% chance of a clear result. The parents, hoping to spare their child more pain from blood tests, decided to proceed with the testing. Unfortunately, the results confirmed that he has the rare STAT3 gene disorder (STAT3 Gain-of-Function Syndrome), an autoimmune and lymphoproliferative disease.

The doctors recommended medication to control the condition. However, the medication would need to be taken for at least 2 to 3 years to improve his lung condition and prevent bacterial attacks on other organs.

Earlier, Izogner needed an oxygen machine both during the day and night to manage his condition. The situation improved, but due to a sudden drop in oxygen levels in his body, he must sleep with an oxygen machine at night. During the day, he needs supplementary oxygen if he is physically active or experiences breathing difficulties.

In addition to breathing problems, Izogner also suffers from eczema on his palms and soles, which frequently causes redness and itching. His physical development is also delayed.

Izogner's father, Chew Vincent (33), is a frozen food salesman earning RM4000 a month. His mother, Yew Mun Yan (32), was originally a flight attendant but left her job due to the pandemic and later started a business selling kindergarten books with her husband. After their child became ill, she became a full-time homemaker. They also have a 5-year-old daughter.

The cost of genetic testing alone has already amounted to thousands of ringgit. Though the hospital visits are partially covered by insurance, they were denied coverage after the genetic diagnosis. From now on, each hospital visit, which occurs once or twice a month, incurs several hundred to thousands of ringgit in medical expenses, placing an immense financial burden on the parents.

After a home visit and review, One Hope Charity has decided to raise RM200,000 for his medical expenses and will fully oversee the fundraising efforts. One Hope Charity will also allocate RM10,000 from the "Emergency Medical and Contingency Fund." For any inquiries, please contact the hotline: 04-539 9212, 016-419 2192, 019-232 2192, or 018-911 4192.