What would you do if you had a medical condition that required treatment that costs thousands of dollars a week? If nothing else, you’d reach your deductible in the first month or two of the year. Chances are, you wouldn’t have a deductible because who would insure you? Most likely, you might decide to just live with the condition as $300,000 is a little outside of most people’s financial capacity.
This is exactly the kind of situation that a 26-year-old woman in Malaysia faces. Rachel Siew Suet Li suffers from Morquio syndrome, a rare metabolic condition is called by the absence or low amount of galactosamine-6-sulfatase, an enzyme used to break down long sugar molecules. This hereditary condition occurs in approximately 1 to every 250,000 people.
Miss Siew’s condition causes weakness in her fingers, and her joints lack enough strength to support her all day long. Due to the weakened muscles and joints, she cannot carry anything that weighs more than a few ounces.
Most patients undergo periodic surgeries that are corrective in nature. The frequency and extent of these surgeries is dictated by the severity of the symptoms. And of course, these surgeries can also result in large medical expenses.
A revolutionary pharmaceutical treatment option only became available two years ago. Despite the costs, Miss Siew opted to try it. Each treatment costs a little over $900, and she needs treatment every day of the week.
Despite the heavy toll Morquio Syndrome has taken on Miss Siew’s bones, cartilage, and skin, she did not let it stop her from graduating from Bricksfield Asia College with a degree in law. Earlier this year, her alma mater and another college worked together to establish a trust fund in her name.
Miss Siew’s remarkable achievements should serve as a reminder that we should not view obstacles as barriers but as opportunities.
Read more about Rachel Siew Suet Li and a trust fund set up in her name by clicking here.
