S’pore bakery raises S$100,000 in 3 days for siblings with rare genetic disorder

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A bakery at Empress Mall, Bakery Brera, has raised S$100,000 for a family with two children diagnosed with Niemann-Pick disease type C.

Niemann-Pick disease type C is a rare genetic disorder that causes patients’ cognitive and physical functions to gradually degenerate.

Lang and his family. Image from Bakery Brera & Fine Foods/FB.

S$100,000 raised in three days

Bakery Brera first announced the fundraiser on their Facebook and Instagram at around 12:30am on Friday, June 18.

By 3pm on the same day, the bakery received S$20,000 in just 15 hours.

As of June 21, around S$100,000 had been raised in three days, Shin Min Daily News (SMDN) reported.

Bakery Brera wrote that close to 1,000 people, including many young children, had contributed after hearing the story of 63-year-old David Lang, the father to the two children with the rare genetic disorder, Justina and Titus.

Image from Shin Min Daily News/FB.

Monthly household expenses about S$7,000

Lang and his wife faithfully provide round-the-clock care for Justina and Titus who are now 30 and 24 respectively.

Both Justina and Titus are tube-fed and need lung-suctioning 24/7. They also have ventilators put on while they are asleep.

This also means that both Lang and his wife have to wake up a few times every night to make sure the medical equipment are well-running and to clear their secretions, according to SMDN and Bakery Brera.

Lang’s monthly household expenses can go up to about S$7,000 to cover the costly medication, medical check-ups and expendables like feeding bags, and the salaries of two domestic workers, ST reported in 2018.

Lang is a lecturer at Singapore Bible College and the sole breadwinner of the family.

In order to cope with the expenses, Lang and his wife, live simply and frugally.

As a result, Lang has never once stepped foot into Bakery Brera’s shop despite living in the neighbourhood because the breads are considered “extravagant” to Lang, Bakery Brera wrote.

Overwhelmed with gratitude by the outpouring of donations

Lang was so taken aback by the “whirlwind” of love, encouragement and funds from strangers that he was at a complete loss of words, wrote Bakery Brera.

Thrina from Bakery Brera said that the amount of donations that poured in in such a short period of time was “completely unexplainable, outrageous and insane” to her and Lang. She wrote:

“To this point, David, family and I are utterly utterly humbled, grateful & floored by your remarkable swift response to the call of help and support. You have allowed us to taste the “craziest” love beyond our wildest dreams which we do not deserve and akin to a glimpse of heaven.”

Lang hopes to express his gratitude personally to every donor eventually but Lang has some pressing deadlines at work now and Justina was hospitalised recently, Bakery Brera explained.

All queries will be handled by Thrina from the Bakery Brera in the meantime.

How did the family find out about their children’s conditions

Lang and his wife had three children named Justina, Timothy, and Titus. They were born healthy.

Of the three, Justina, the eldest child, was the first to display symptoms at around five years old, ST reported in an interview with Lang in 2018.

Image from @thir.st/Instagram.

At that point in time, doctors were unable to produce a diagnosis nor provide medical treatment.

Soon after, Timothy and Titus started displaying similar symptoms, but to varying extents.

Symptoms of Niemann-Pick disease type C include seizures, difficulty in speech, coordinating and eye movements.

Sadly, Timothy passed away in 2004 when he was 10.

Lang shared with ST in 2018 that Timothy went into a seizure after choking on his food at a church camp and was sent to the hospital. At the hospital, Timothy fell into a coma and passed away after 19 days.

Before his death, Timothy’s tissue samples were sent for examination in the United States, where it was later confirmed that he had Niemann-Pick disease type C.

With Justina and Titus exhibiting similar symptoms, the doctor who examined Lang’s two other children subsequently confirmed that they shared the same diagnosis as Timothy.

17 years after Timothy’s death, Lang still sheds tears in secret when he thinks of him, Bakery Brera shared in their Facebook post.

First known cases in Singapore

There are around 500 people diagnosed with Niemann-Pick disease type C globally.

The odds of having the rare Niemann-Pick disease type C are one in every 150,000, according to ST.

A child may stand a quarter chance to suffer from this genetic disorder when both parents carry the recessive gene.

Those with symptoms at birth do not live past a few years while those who display symptoms at a later stage typically do not live past their middle to late teenage years as life-threatening complications develop.

Lang’s case is extremely rare as all three children are affected by this disease.

They are believed to be the first known cases of Niemann-Pick disease type C in Singapore.

Top image via Shin Min Daily News and Bakery Brera & Fine Foods/Facebook