Mum who quit job to care for children with rare genetic disorder given Caregiver of the Year Award

Madam Chua See Ping was one of two recipients of the Caregiver of the Year Award. ST PHOTO: NG SOR LUAN

SINGAPORE - Madam Chua See Ping quit her job last year when her daughter's health took a turn for the worse as a result of a rare genetic condition that blinded her.

It was the latest in a string of challenges that Madam Chua, 53, a former project management office employee, and her family have had to grapple with.

Her daughter Amabel, 25, and son Samuel, 22, have Wolfram syndrome - a rare genetic disorder that causes Type 1 diabetes.

With that condition, the pancreas does not produce enough insulin, a hormone that regulates blood sugar.

Wolfram syndrome is also associated with vision loss and impairment, deafness and degeneration of the nerves. People with the disorder usually have a life expectancy of between 30 and 40 years.

Madam Chua, who previously worked at pharmaceutical giant Pfizer, had been at a new job at the Integrated Health Information Systems for just over a year when her daughter started to develop more complications.

"She has been in and out of hospital, and I stay with her overnight (at the hospital) to take care of her," said Madam Chua, who also has a third child, a 23-year-old son who is healthy.

"In the corporate world, projects have tight deadlines and schedules. I didn't want to shortchange (the company) because I need to focus on my daughter, so I thought it'd be better to pay 100 per cent attention to her," she told The Straits Times.

Madam Chua accompanies her daughter, who has end-stage kidney failure and uses a wheelchair, to her dialysis sessions three times a week, helps with her insulin pump and tends to her other needs around the clock.

She also provides emergency care for her son, who sometimes has hypoglycaemic episodes - when his blood sugar falls to a potentially dangerous level.

Madam Chua also watches out for how her children are feeling: "Although they seem okay on the surface, I'm not sure what they're thinking about. They know this genetic disorder will not let them live beyond 39. I try to talk to them whenever they want to and be a friend to them."

Madam Chua was one of two recipients of the Caregiver of the Year Award at the inaugural Access to Diabetes Care Awards held by local charity Diabetes Singapore on Sunday (Nov 14).

A total of seven people received awards for their resilience in coping with diabetes, as well as contributions to diabetes care and related social and community work and education, at an event to mark World Diabetes Day at the Lifelong Learning Institute.

The award recipients are: Madam Mary Lee Teng Kim, Madam Chua, Madam Zaitoon Bee Syed Mohd, Mr Ahmat Pagi, Ms Seet Zi Yan Samantha, Madam Lai Yee Khim and Madam Lian Xia Joyce.

DS Resilience Award recipient Ahmat Bin Pagi (right) with his wife Hamidah Mohd Noor. ST PHOTO: NG SOR LUAN

Mr Ahmat, 68, who received the DS (Diabetes Singapore) Resilience Award, has been battling diabetes for more than 40 years with the help of his wife, Madam Hamidah Mohd Noor. A bout of pneumonia caused him to fall into a coma for 10 days a decade ago, and he could not recognise Madam Hamidah for several months after he woke up.

The ordeal made Mr Ahmat, who uses a wheelchair, realise that he needed to take his health more seriously. He cut down even more on sugar and started exercising more regularly, such as by walking short distances.

He said: "After I recovered from my coma and once I knew what was happening, I realised I have to motivate myself. Even though there's somebody caring for you, you also have to sacrifice and change your lifestyle."

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