Mother turns grief into a mission against orphan diseases

November 21, 2015 08:02
Christina Strong, founder of Joshua Hellmann Foundation for Orphan Disease, has made it her mission to help patients and their families fight rare diseases. Photo: HKEJ

Joshua was born in 1992, looking healthy and smart, his mother Christina Strong recalled.

But on Christmas day of 2002, the 10-year-old boy suddenly suffered what appeared like a stroke.

The family sought help from local private clinics and public hospitals. No one could say what was the cause of his illness.

In 2003, when the deadly SARS epidemic broke out in Hong Kong, Strong decided to take her son to Switzerland, her birthplace.

There the boy suffered another stroke. Doctors said he was afflicted with Melas Syndrome, an inherited mitochondrial disorder that affects many of the body’s systems, particularly the brain, the nervous system and muscles.

Since the family has already settled in Hong Kong since 1989, the mother and son decided to return to the city.

The family tried to learn as much as they could about Joshua's illness by reading about it on medical websites and other online sources.

They also invited a Japanese medical professor to come over for consultation, something which parents of humbler means probably could not afford, said Strong.

But despite all their efforts, Joshua passed away after a five-year battle with the disorder in October 2007.

The boy's death caused deep sorrow to the family, but it also motivated Strong to do whatever she could to help other sick children, like Joshua, who might not be able to receive timely and accurate diagnosis through the medical system alone.

She founded the Joshua Hellmann Foundation for Orphan Disease in honor of her son, with the mission of advancing the awareness, diagnosis, treatment and research of orphan diseases, and improving the welfare of children with orphan diseases in Hong Kong.

Orphan diseases refer to rare genetic disorders that usually are not addressed by the pharmaceutical industry because investing in their treatment provides little financial incentive.

There are about 30,000 children and adults suffering from such diseases in Hong Kong.

As part of its efforts to carry out its mission, the foundation joined hands with Mead Johnson Nutrition to launch the Vital Step program, in which 500 qualified parents can enjoy a full subsidy to cover the cost of screening at the Center of Inborn Errors of Metabolism of The Chinese University of Hong Kong (CUHK).

Strong said about one in every 4,000 newborn babies in Hong Kong suffers from inborn errors of metabolism (IEM). In fact, many people do not know they are gene carriers as they do not display the symptoms of the disease.

In foreign countries, if one is diagnosed with genetic disorder, everyone in their family has to take a genetic test. However, this doesn’t apply to Hong Kong.

In this regard, our international city is no different from a Third World nation, Strong observed.

British medical experts invited by Strong drew a similar conclusion after their field visit. High-end medical equipment in hospital labs was only for teaching.

Strong said local universities were rather afraid of the government. Without securing necessary resources from the government, these institutions didn't conduct such testing for children for fear that a chain of responses would be triggered if a patient was confirmed positive.

Two local hospitals now provide such services. However, Strong is not impressed and believes that there should have been more cooperation among institutions.

“CUHK and HKU [University of Hong Kong], unlike many foreign universities which are usually geographically so far away, do not share any collaborative projects in this regard. Why is that so? That’s politics. They see each other as rivals and have not put patients’ well-being as the top priority.”

The first children's hospital in Hong Kong will start operating by phases from 2018.

The foundation once offered to help build a testing laboratory specifically for rare illnesses so that authorities need not have to spend so much money on sending samples abroad.

Yet, they rejected the offer, largely because of politics, Strong said.

She recalled that some years back, the government decided to give HK$6,000 handouts to all permanent residents after a huge budgetary surplus. 

She found the scheme "pointless" because it showed that the government had no good use for its surplus and had not even thought of supporting genetic tests for children. Each test would cost about HK$6,000 to HK$10,000.

In her opinion, local authorities are shortsighted because they fail to consider that health is the foundation of a bright future for society.

She said the British government would think otherwise, believing that investing in research is a better option to fight diseases.

For instance, if IEM is identified and treated early before the onset of symptoms, its impact on children can be minimized, preventing a situation where they have to go in and out of clinics and hospitals for the rest of their lives, she said.

Every visit to children suffering from orphan diseases is heartbreaking for Strong.

Sometimes she feels powerless, overwhelmed by she thinks is injustice committed against those children. 

But she thinks of Joshua, and what happened to him strengthens her resolve to pursue her mission. She will continue to work for a future where children need not suffer like her son did.

This article appeared in the Hong Kong Economic Journal on Nov. 20.

Translation by Darlie Yiu

[Chinese version中文版]

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Christina Strong's son Joshua (second from right), suffered from Melas Syndrome and passed away at the age of 15 after a five-year battle against the disorder. Photo: HKEJ
Through her foundation, Christina Strong (second from right) reaches out to patients and their families. Photo: HKEJ
The Vital Step program subsidizes 500 qualified parents for IEM screening at the Chinese University's Center of Inborn Errors of Metabolism. Photo: HKEJ
In December 2008, Christina Strong's foundation became a member of the Clinton Global Initiative. Photo: HKEJ

Writer of the Hong Kong Economic Journal