A family in Singapore is appealing to the public to help raise over a million dollars for a growth-stimulating drug for their nine-month-old son born with dwarfism.
One Amanda Tan took to Facebook on Saturday (July 9) to share their son Jayden’s rare genetic condition called achondroplasia or dwarfism, affecting his bone growth.
Ms Tan listed out “a host of serious medical issues” Jayden would face growing up, such as short stature, disproportionate growth, nerve compression, spinal deformity, back pain, and recurring knee and joint pains. He could also experience sleep apnea, bladder, or bowel dysfunction or hearing loss.
Depending on the severity of complications, Jayden may require surgery in the future.
Adult males with achondroplasia have an average height of 131cm, while females grow to about 121cm.
Ms Tan attached a National University Hospital (NUH) doctor’s letter in her post, citing a new type of drug approved by the Food and Drug Administration which could help with Jayden’s condition.
Phase 3 trials for Vosoritide or Voxzogo have shown positive results in inducing growth of about 1.57cm per year in patients.
Voxzogo was invented specifically to treat achondroplasia and is the only approved treatment that Jayden could take until he’s 18 years old. In doing so, he can possibly grow 20-30cm more than the average.
“Apart from increasing his height, it will also lessen the severity of his medical complication, and that is most important,” Ms Tan noted.
However, the drug is currently not on the list of medications in Singapore approved for subsidies. It also costs around S$40,000 to S$50,000 per month. The doctor’s letter also estimated the drug to cost S$420,000 per year.
Ms Tan is now trying to raise S$1.5 million to fund the first three years of Jayden’s treatment. The total treatment would cost S$7,000,000.
“Please help Jayden to grow normally like other children, any small amount within your means will give him a chance to grow up pain-free and healthy,” she added.
The family would also continue in their appeal to the government to include the drug for subsidy.
Members of the public can donate directly to Jayden’s account; the bank details are included in the Facebook post or through the Give. Asia campaign here.
More than S$72,000 have been raised towards Jayden’s cause as of writing. /TISG
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