SINGAPORE — First, the vision problems. Then, regression of motor skills such as handwriting and climbing of stairs.
As the disease progressed rapidly, Wenjie’s family members could only watch helplessly as their loved one became a shell of his former self.Based on international statistics, ALD is estimated to affect just one in 10,000 to 17,000 people. Although it is not known how much time he has left, hope and love have sustained the family in the past eight years.Having experienced the hardships of caring for a loved one with a rare medical condition, they have been involved in advocacy work to raise awareness and empathy for families living with patients who have rare diseases.
Wenjie’s mother, Madam Yeo Kheng Hui, 47, said that she kept asking herself if she had caused her son to be this way. “Patients with greater care needs may also be taken care of by our KTP-NUCMI Home Care Team. There is also the NUH Children’s Liver and Rare Diseases Fund, which provides financial assistance to NUH KTP-NUCMI patients,” she added.
He decided to stop working to “stabilise the home front” after the family’s domestic worker, who has been caring for Wenjie for more than a decade and is deeply attached to him, expressed her wish to retire. Every day, Mr Phua wakes at 1am and 4am to change his son’s diapers and manages a six-hourly feeding schedule via a feeding tube.
Being in in the “sandwich class” — or the middle-income segment that has to support young children and older parents — Mr Phua said that they could not qualify for any financial assistance scheme like the low-income group and they do not have any subsidies when caring for Wenjie.He estimated that they spend a five-figure sum every year on Wenjie’s medical needs.“There are many children with medical needs who are dependent on machines.
It is also important to reach out to various organisations and groups to seek support so that they feel less lonely. “Subsequently, they may have difficulty reading and vision problems become more evident. Walking difficulties may then set in.” Assoc Prof Tay said that the prognosis is “poor” for the childhood form of ALD, and most children die within five to 10 years of diagnosis, if left untreated.