A 37-year-old Singaporean mother resigned from her preschool teaching job to care for her 9-year-old son with Angelman syndrome.
Chen Yuanqin’s son Chace was diagnosed with the rare neurogenetic disorder at 18 months old. Angelman syndrome typically develops between the ages of 6-12 months, causing developmental issues such as “walking and balance disorders, gastrointestinal issues, seizures and little to no speech.” The condition affects one in 15,000 live births worldwide.
In a YouTube video uploaded by Singaporean newspaper Lianhe Zaobao, Chen recalled feeling heartbroken after receiving a call from the neurologist about Chace’s diagnosis.
“I remember our family was out for dinner that day. When I saw the call from the neurologist, I felt very uneasy,” Chen said, according to AsiaOne. “When I was told [that Chace has Angelman syndrome], I went back home and cried with my husband.”
Chen left her job as a preschool teacher three years ago and became Chace’s full-time caregiver. Her husband currently works full-time to provide for the family and Chace’s numerous treatments.
Due to his condition, Chace struggles with his speech and is unable to swallow his food properly. Chen said she has been waiting nine years to hear her son call her “mom.”
“I’ve been telling him, ‘The moment you call me mom, I’ll immediately buy a flight ticket and bring you overseas,’” the 37-year-old mother was quoted as saying. “I’ve been saying to him for a few years now, I’m still waiting. [I can only] hope.”
The 9-year-old is currently undergoing occupational therapy to improve his ability to perform everyday tasks independently, as well as physiotherapy and speech therapy, among others.
Chen added that her family has frequently encountered awkward situations, such as when commuters on the bus get annoyed that Chace takes a long time to board.
“In the past, I would endure when others treat my son like that. Hold it in till my kids are asleep, then I would cry uncontrollably,” Chen said. “I must have the courage [to] bring him out. He deserves to see the world just like us.”
Chen and her husband also have an 11-year-old son and a newborn daughter.
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