Originally reported by The Straits Times, the Chew family from Singapore does everything they can to keep their nine-year-old daughter alive, even if it means spending their life savings and hustling every single day to get everything she needs. Zecia Chew maybe appear like a completely normal functioning 9-year-old girl, but she has essential hospital visits every two weeks to keep her alive. Zecia has a rare disease called Gaucher disease and without these visits, her body would not produce enough enzyme by itself to get rid specific fat deposits. To learn more about Gaucher disease click here.
If Zecia didn’t seek medical treatment biweekly, her liver and spleen would erupt from the fat build up around her organs. She is is one of three children to have this disease in Singapore, but that doesn’t mean other children aren’t suffering from it around the rest of the world.
The costs to maintain Zecia’s life are astronomical, but the Chew family is doing whatever it takes to make the payments. They have depleted most of their savings, as well as both Mr. and Mrs. Medisave accounts, which equates to around $30,000. As a total monthly household income, they bring in roughly $6,000 which is not sustainable for the needs of Zecia. Thankfully, they have garnered some assistance from the government, but they fear with the rise of medical cost it will eventually not be enough.
Many families have loved ones with rare diseases and cannot afford the lifestyle it brings. According to Rainbow Across Borders’ study, 7 out of 10 patients or caregivers feel too overwhelmed and stressed about the disease they are facing and 8 out of 10 said the costs that come with it are too much of a burden to maintain. 2 out of 3 said the government support they’ve received is not nearly enough to help pay for their expenses. Even 7 out of 10 caregivers reported having to give up their careers to aid their loved one.
No one chooses this life, but these amazing people buckle down and do whatever they can for their loved ones. They caregivers are the true heroes.
The Chew family may be find it challenge make ends meet under the huge financial pressure of a rare disease, but they would do anything to keep their Zecia happy and healthy. We salute you!