Parents in S'pore raising S$1.5 million for growth-stimulating drug after baby diagnosed with dwarfism

Those with dwarfism have short statures and experience disproportionate growth, among other medical complications.

Ashley Tan | July 10, 2022, 06:31 PM

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A family in Singapore is attempting to raise over a million dollars in order to afford medication for their baby.

One Amanda Tan posted a plea on Facebook for her nine-month-old son, Jayden.

Son has dwarfism

Jayden was born with achondroplasia, a genetic disorder characterised by dwarfism.

Those afflicted by this disorder have short statures and experience disproportionate growth—adult males with achondroplasia have an average height of 131cm, while adult females have an average height of 121cm.

The disorder also leads to a host of other medical conditions, such as spinal deformities, bowing of legs, back pain, sleep apnea, and hearing loss.

Delayed physical and speech development, inability to reach objects, and difficulty in performing "self hygiene and toilet care" were some other difficulties Tan said Jayden would experience.

Photo from Give.Asia

New drug stimulates growth

However, a new type of Food and Drug Administration-approved (FDA-approved) drug called Vosoritide, also known as Voxzogo, can help stimulate bone growth in those with achondroplasia.

According to a National University Hospital (NUH) doctor's letter appended by Tan, Phase 3 trials have shown that individuals who take this drug are able to grow an average of 1.57cm more per year.

This means that Jayden could possibly grow 20-30cm more than usual if he takes the drug till he is 18 years old, Tan said.

According to Tan, the drug can also "lessen the severity of his medical complication[s]", tremendously improving his quality of life.

Photo from Amanda Tan / FB

Family will appeal to government

However, Tan said the drug costs around S$40,000 to S$50,000 per month, while the doctor's letter pegged it at S$420,000 per year (S$35,000 a month).

Jayden will need to receive the treatment until he is 18 years old.

Additionally, the drug is not under the list of medications in Singapore approved for subsidies.

Therefore, Tan is trying to raise a total of S$1.5 million to fund the first three years of Jayden's treatment.

In the meantime, she said that the family will continue to appeal to the government to include this drug under the list of subsidised drugs.

You can make a donation to help Jayden via the Give.Asia page Tan has set up.

Close to S$27,000 has been raised via the platform at the time of writing.

You can also transfer cash directly to the bank account Tan has set up for Jayden, the details of which you can find on her Facebook post.

Top photo from Amanda Tan / FB