Refusing to atrophy in life takes courage

City talk | Terence Chang 15 Nov 2018

The first spinal muscular atrophy patient I met was University of Hong Kong student Josy Chow Pui-shan, a Spirit of Hong Kong Awards winner.

Only able to type with two fingers, Josy spent four months composing a letter to the chief executive, pleading the government to introduce to Hong Kong the new SMA drug Spinraza.

The award-winning book Love Never Ends tells stories of how SMA patients fought the paralyzing condition with courage and determination, and the support they received from family, friends, school, doctors and social workers.

I met the patients featured in it at the Hong Kong Golden Books Awards.

Recently, I had the opportunity to meet another patient, Simon Yeung Siu-on.

I thought we could go out and talk over tea, but Families of SMA Charitable Trust Hong Kong chief executive William Cheung told me it isn't easy for Yeung to go out.

So I visited him at home.

His mother was there, and also his good friend Ah Kam, who has Pierre Robin Syndrome.

"The disease affects my speech, but I can take care of On," Kam said.

"I would take him to the cafe occasionally and play card games with him

Yeung started to suffer from SMA when he was 2 years old.

Since then, he couldn't run around like other children, his mother said.

"At first, I didn't know what to do or where to look for help. I was desperate.

"Then I met Mrs Fok, another mother with a child having SMA.

"Her child's condition was worse, but she didn't give up.

"That gave me strength to carry on."

Yeung's mother once had cancer.

But with willpower, she has beaten the disease and continues to take care of him.

Yeung said, "My mother is good to me.

"I know that of course.

"But sometimes I still feel that she talks too much and is overly worried about me."

Yeung, 22, has grown a mustache, and his mother didn't comment on that.

"He's a grown-up now. I am trying to give him space."

Kam said he would sometimes go on the internet to look for further education programs for Yeung, who has already obtained a diploma in psychology at the Open University of Hong Kong.

Yeung aspires to become a social worker but has difficulty finding suitable tertiary training for that career objective.

Terence Chang Cheuk-cheung is the retired headmaster of Diocesan Boys School.

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