Crowdfunding campaign seeks S$286,000 to provide yearlong treatment for 67-year-old woman battling rare bone disorder

SINGAPORE: A 67-year-old woman is grappling with an uncommon medical condition known as FGF23-related hypophosphatemia, which has induced a form of Osteomalacia caused by a hormone-driven tumor.

This condition leads to an ongoing loss of phosphorus. Consequently, Lee Wan Shan, a resident of Singapore, has not only lost all of her teeth but also endures excruciating bone pain, confining her to her bed for more than a decade.

She may very well be the sole adult in Singapore afflicted by this rare ailment. To enhance her quality of life, she is currently under palliative care and relies on prescribed morphine and painkillers to manage the severe discomfort in her bones and nerves.

Recently, a potential solution has emerged that kindles hope for Mdm Lee’s recovery – the Burosumab Treatment. However, in order to embark on this treatment journey, involving monthly injections that could cost $23,800.

In light of this, Mdm Lee’s family is earnestly seeking public assistance through the online crowdfunding platform Ray of Hope. Their goal is to raise a total of S$286,000, enabling Mdm Lee to undergo a full year of treatment.

As per available information online, Burosumab, marketed under the brand name Crysvita, is a human monoclonal antibody medication that gained approval in 2018 for addressing X-linked hypophosphatemia and tumor-induced osteomalacia. Burosumab is used to normalize phosphate levels in adults and children who are at least 1 year old and have X-linked hypophosphatemia.

Successfully removed the tumor in 2008, but it spread to her liver

Mdm Lee, a resident of Jurong West, was diagnosed with a tumor in 2006. Following a surgical procedure to remove the tumor in 2008, her health exhibited a brief improvement.

However, within a few months, a distressing turn of events occurred as the tumor metastasized to her liver. Remarkably, the tumor began secreting fibroblast growth factor 23 (FGF-23), leading to the continuous excretion of phosphorus from her kidneys and triggering the development of osteomalacia.

In an interview with the local Chinese media outlet “Shin Min Daily News,” Mdm Lee described the intense bone pain during episodes, which rendered her unable to turn over while sleeping. Her daily sustenance relied solely on liquid nourishment, and the management of her excretion necessitated the use of diapers.

“In my family, there was no history of this kind of illness. Before falling ill, I used to run, climb mountains, and exercise downstairs, so I never thought I would get this disease.”

Her reliance on prescribed morphine and painkillers to mitigate bone and nerve pain has inadvertently compromised her immune system, precipitating symptoms such as hallucinations, stomach discomfort, loss of appetite, and dizziness.

Approximately a year ago, following consultation with an endocrinologist, the family was advised that the Burosumab Treatment was the sole viable option due to the infeasibility of tumor removal through surgery. This lifelong treatment incurs a substantial monthly cost estimated at $23,800.

Significantly, this treatment employs a non-standard medication, thereby precluding eligibility for mainstream funding or subsidies.

By embracing this course of treatment, Mdm Lee can potentially alleviate her reliance on daily morphine doses for pain management, thereby enhancing her overall quality of life.

Despite exhausting multiple avenues in pursuit of financial aid, the family’s efforts have proven insufficient in alleviating the burdensome financial implications. Despite accessing the hospital’s endowment fund, which offered a one-time assistance of up to $30,000, the treatment’s expense remains prohibitively high.

“We’ve exhausted all other means and will have to rely on your kindness and generosity to help give my mother a chance to live a little better, ” said the family in the statement on Ray of Hope.

The funds, totaling S$286,000, are dedicated to covering one year of treatment for Mdm Lee, with the full payment requirement upfront.

Mdm Lee’s daughter, Wong Xue Li, disclosed to Shin Min Daily that they had previously applied for subsidies related to the medication, but encountered an absence of follow-up.

“We also emailed the manufacturer of the medication, but didn’t receive a response.”

She also mentioned that doctors told them that if the medication leads to improvement, perhaps the dosage and cost could be reduced.

During the early stages of the disease, pinpointing its origins proved elusive, leading the family on an exhaustive quest for medical intervention, ultimately depleting their savings substantially.

Recalling that period, Mdm Lee recounted consulting various doctors in their pursuit of answers, yet no definitive cause emerged.

“This period lasted about 3 years, and we consulted multiple doctors, but unfortunately, the condition didn’t improve. Instead, it led to us using up the around S$40,000 we had saved up.”

She mentioned that she is a homemaker, and her husband used to do odd jobs. He retired many years ago, and now they rely on their son’s monthly income and government welfare subsidies to sustain their lives.

Daughter’s sacrifice for ailing mother

The devotion of her 32-year-old daughter to caregiving prevented her from entering the workforce for years, resulting in a burden of guilt.

Mdm Lee pointed out that her 75-year-old husband is gradually weakening as well and can’t take care of her for extended periods. Therefore, her daughter has been taking care of her since graduating from secondary school.

“My daughter is already 32 years old, but because she hasn’t entered the workforce, she hasn’t worked or found a boyfriend.”

Mdm Lee disclosed that her daughter has diligently cared for her for an extended duration, while she also nurtures the aspiration that her daughter will one day embark on building her own family.

“This is also the reason why I continue to hold on. I hold onto hope that one day I’ll get better.”

As of Friday (4 Aug), the online crowdfunding campaign initiated in May has garnered a heartening total of S$32,479.

Nevertheless, in order to achieve their target, the remaining 89% must be raised to ensure that Mdm Lee receives the essential treatment.

Kind-hearted individuals and members of the public are cordially invited to contribute to Mdm Lee’s cause through the Ray of Hope platform.