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Parents of rare disease boy praised for their devotion
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DOCTORS from a leading American hospital have praised an 11-year-old boy’s parents for the care they’ve given their son, who has a rare genetic disorder.
The boy, who has Cri du Chat syndrome, yesterday received group diagnosis from experts from local and US hospitals at Shanghai International Medical Center.
Afterward, Dr Shen Yiping from the Boston Children’s Hospital said the parents showed “extraordinary patience, energy and love” in caring for their son.
The boy, whose name was not released, was diagnosed with Cri du Chat syndrome when aged 3, a condition that affects an estimated 1 in 50,000 newborn babies.
Symptoms include cognitive, speech, and motor delays, behavioral problems, unusual features, hyperactivity, autism and intellectual disability.
“I was impressed when I met the boy. He’s the oldest child with the disorder I’ve met in China, as most children with the condition die in infanthood or have not been identified,” said Shen. “Even in the US, 10 percent of such children die within the first year.”
One symptom of the condition, which gets its French name from the cat-like cry of affected children at birth, is feeding problems due to difficulty swallowing and suckling.
“The parents have shown extraordinary patience, energy and love to take care of the boy, who was fed milk by dropper and almost killed by serious infection in the first year,” added Shen.
The boy’s parents have taken him for various therapies in efforts to find treatments.
Yesterday, the expat experts cautioned the family to keep their expectations realistic, but gave them advice on how to help their son live a more independent life.
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