She is unable to move freely and relies on her family and a wheelchair. Due to swallowing issues and the gradual decline of gastric function, she sometimes experiences vomiting, making it challenging to absorb the necessary nutrients for her body. She depends on a nutrition formula recommended by the hospital to alleviate the burden on her digestive system, improve reflux issues, and attempt to gain weight.
She is Nyeow Siow Toong, a 22-year-old individual with Type 2 Spinal Muscular Atrophy (SMA Type-2), actively combating this rare genetic disease in the country.
【Despite her deteriorating health, Siow Toong's unwavering determination to pursue education remains. One Hope Charity has provided assistance by supplying an eye-tracking device to help her operate a computer】
Hailing from Kahang, Johor, Siow Toong's condition drew attention from her family as she couldn't turn over shortly after birth. Following genetic tests and assays, she was diagnosed with Type 2 Spinal Muscular Atrophy at the age of 2. Two decades ago, this hereditary neuromuscular disease was poorly understood by only a few medical institutions and professionals, and there were no successful treatments developed.
The various symptoms of spinal muscular atrophy have deeply entwined and affected her life for the past 20 years. From the age of 10 months, she required assistance to move and was unable to walk or sit without support. During primary school, she sometimes experienced vomiting and difficulty swallowing. In secondary school, she faced lung infections, weight loss, malnutrition, and even struggled to lift a water cup.
The physical pain forged Siow Toong's resilient willpower, and she strived to become a beacon of light, illuminating not only her own path but also those around her. With a strong will, she pursued education from kindergarten to high school, absorbing various knowledge as much as possible. Despite facing some classmates' lack of understanding and mockery, she achieved remarkable SPM results with 1A6B, showcasing her unwavering belief in overcoming adversity and exuding positivity.
After leaving school, she spent most of her time reading news, writing journals, drawing, memorizing vocabulary, and occasionally chatting online with others facing similar conditions. Despite being able to use only one finger to operate her phone, she doesn't rule out the possibility that this finger may also gradually atrophy in the future. One Hope Charity & Welfare previously allocated RM11,000 through the "Emergency Medical Fund," providing her with an eye-tracking device to control the computer with eye movements. Additionally, they assisted her with a laptop and a computer stand.
【After examination, the medical team urges the family to acquire new equipment to gradually strengthen Siow Toong's body】
In the past few years, Siow Toong has been unable to take care of herself in daily life and relies on her parents to feed her through a nasogastric tube. She requires assistance to move in and out of a wheelchair. She undergoes regular hospital check-ups to examine various bodily functions, including gastrointestinal, dental, and swallowing functions. However, the pandemic and Movement Control Order (MCO) have affected her scheduled appointments, leading to a postponement until this year.
Facing issues like gastroesophageal reflux and weakened gastric function, she often vomits at home, making it difficult to absorb the nutrients from the formula milk. After the latest examination, doctors believe that she needs to use an automatic enteral feeding pump to better control the amount of formula milk she receives, reduce reflux, and ensure proper nutrient absorption.
Additionally, Siow Toong requires a more easily digestible and absorbable formula milk to help her gain weight gradually. To enhance her mobility, the medical team recommends a custom-made wheelchair that allows her to lie down and elevate the lower part, providing greater comfort in movement. She also experiences continuous secretion of saliva and phlegm, requiring regular use of a suction machine.
While most testing has been completed, the medical team suggests that she should be discharged only after obtaining the mentioned medical equipment to ensure proper nutrient intake and stabilize her health.
Siow Toong's parents, running a small business, have diligently cared for her over the years and covered substantial treatment and equipment costs. Considering Siow Toong's urgent need for the specified medical equipment and the family's financial constraints, after thorough verification, ONE HOPE CHARITY has agreed to assist in raising a total of RM60,000. This includes a custom-made wheelchair, an automatic enteral feeding pump with a box of infusion bags, a suction machine, and a one-year supply of formula milk.
The family has agreed to entrust the fundraising activities entirely to ONE HOPE CHARITY, which will also handle the collection of donations. For any inquiries, please contact the hotline at 04-539 9212, 016-4192 192, 019-2322 192, 018-911 4192.