An enthusiastic seeker of knowledge with an inquisitive mind, eight-year-old Ho Wen Xi loves learning and reading. Like most girls her age, she also enjoys getting crafting and playing dress up. However, behind that sweet smile is a story of a tenacious girl who is facing multiple health struggles.
Wen Xi was born with Fanconi Anemia (FA), a rare genetic disorder that causes physical malformations and gradual bone marrow failure. For Wen Xi, FA has affected her vision, hearing, the skeletal structure of her hands and resulted in overlapping kidneys. Wen Xi’s speech delay, another effect of FA, had also concerned her parents who decided to pick up and teach Wen Xi sign language. Goo Siew Lin, Wen Xi’s mother, recalled “After learning sign language, Wen Xi was often calmer because she now had a means to communicate with us.”.
Wen Xi’s speech breakthrough was in 2019, after she watched a performance of her favourite animated movie Frozen. “She came up to me to ask if I could buy her an Elsa (princess character in Frozen) dress. She also started singing along to Frozen songs and was subsequently chattier.” Siew Lin recalled.
Tenacity amid health challenges
Later in the same year, Wen Xi was scheduled for hand reconstruction surgery, but the doctors discovered her declining platelet count which required her to undergo a bone marrow transplant. During the six months that she was hospitalised, Wen Xi underwent multiple medical procedures.
Siew Lin recounted, “She was prepared for the procedures because she liked reading up on the human body. The nurses were surprised by her bravery, she was not scared of the needles or blood.”. With aspirations of pursuing a career in the medical field one day, Wen Xi regularly reads up about the human body.
In April 2020, Wen Xi was finally discharged from the hospital. However, she was still battling other complex medical conditions including esophageal stricture, the narrowing of the esophagus, and motor difficulties due to a bilateral hip dislocation, which required follow up treatment. She also subsequently developed cyclical vomiting syndrome (CVS), a rare condition that causes repeated episodes of vomiting and nausea.
An inquisitive knowledge seeker
“Wen Xi loves reading and learning but because of CVS, some enrichment classes turned down her applications. It breaks my heart.” Siew Lin explained.
Wen Xi also had to delay her Primary One registration twice which dampened her excitement as she was looking forward to starting school. Fulfilling her wishes, Wen Xi’s parents enrolled her in the Little Hands Bilingual-Bicultural Programme (LHBBP) run by the Singapore Association for the Deaf (SADeaf). “We are grateful that the LHBBP by SADeaf accommodated Wen Xi, and was more than willing to have her join classes when she was feeling well.” Ho Choong On, Wen Xi’s father, shared.
A Helping Hand
Recognising their situation, SADeaf referred the family to the Goh Chok Tong Enable Fund to help alleviate the transportation costs to and fro home and the National University Hospital thrice a week for Wen Xi’s medical appointments. “Due to her condition, we had to hail a taxi whenever we brought Wen Xi for her appointments. The costs added up, but the GCTEF has lightened that financial strain.” Siew Lin explained. In supporting the aspirations of persons with disabilities, the GCTEF has also covered Wen Xi’s LHBBP fees since 2022.
“When her CVS stops, we hope to treat Wen Xi’s esophageal stricture and enroll her in a mainstream school.” shared a hopeful Siew Lin.
Wen Xi is one of over 1,000 persons with disabilities who have had their aspirations and needs met through the GCTEF. Since its inception in 2016, the GCTEF has improved the employability of another 1,000 and reached over 40,000 Singaporeans in promoting social inclusivity.