One mother is hoping to give her baby a chance at a normal, or closer-to-normal life, after he was diagnosed with achondroplasia, a common form of dwarfism.
According to medical resources online, achondroplasia is a bone growth disorder characterised by short statures of around 4 feet, or 122cm, according to the US FDA.
Additional complications that the nine-month-old boy named Jayden may face include spinal deformity, bladder or bowel dysfunction and nerve compression, wrote the boy’s mother Amanda Tan in a Facebook post.
Tan posted an appeal on Saturday (July 9) for donations to fund a medication that’s specifically used to treat the condition and improve his quality of life.
PHOTO: Screengrab from Facebook/Amanda Tan
However, the drug Voxzogo would cost about $420,000 a year, according to a memo written by a specialist at the National University Hospital. The letter was posted to a Give.Asia page set up to receive donations from members of the public.
PHOTO: Screengrab from Give.Asia
According to the memo, the average height of an adult male with Jayden’s condition is expected to be 1.3m. With the growth-stimulating drug, however, it could spur growth of 1.57cm more per year.
The drug is approved for individuals aged two or older according to the European Medicines Agency and approved for those at least five years of age, according to the US Food and Drug Administration (FDA).
Wrote Tan: “There is a drug (Voxzogo) that was invented specifically to treat his condition and allow bone growth. It is the only approved treatment for dwarfism and can stimulate growth in height by 20-30cm if he takes Voxzogo until 18 years old.”
She added that apart from the height increase, the drug would also help “lessen the severity of his medical complication and that is most important”.
“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,” Tan shared.
The $1.5 million that Tan and her husband Lawrence Toh are hoping to raise would be sufficient to fund only the first three years of medication.
In the post on Give.Asia, it stated that the drug is currently not eligible for subsidy, with Tan adding that they would “continue to appeal to the Ministry to list this medication under the approved subsidy list”.
According to the page on the crowd-funding site, a total of $71,551 has so far been raised for Jayden since the campaign was set up last week. However, Tan noted in her post that about 10 per cent of each donation would be taken and allocated to boosting the Facebook campaign.
“This allows us to reach more people and gather more funds for him,” she wrote.
In an update on July 9, Tan shared photos of an American boy with achondroplasia who’s been treated with Voxzogo for four years.
“It helped to correct his bow leg tremendously and has prevented him from needing surgery,” wrote Tan.
PHOTO: Screengrab from Give.Asia
This article was first published on AsiaOne and republished on theAsianparent with permission.
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