Welcoming a newborn is one of the happiest events a parent can look forward to, and most parents would want nothing more than a healthy baby.
While that happens most of the time, there are some unfortunate cases where the baby is born with a defect, be it physical or mental.
Sadly, it is the latter for one Singaporean family, whose 9-month-old baby was born late last year with the genetic condition dwarfism.
To give their baby a chance at a healthier life, his parents now need S$1.5 million in donations to obtain a medicine for treating dwarfism.
On Saturday (9 Jul), the child’s mother reached out to the public via a Facebook post detailing the family’s struggles.
In it, she revealed that he had been born with the condition called achondroplasia, which is more commonly known as dwarfism.
Left untreated, he would most likely grow to a maximum of only 130cm — the average height for males afflicted by this ailment.
He would also potentially suffer various other medical issues, including spinal deformity, bladder or bowel dysfunction, and even hearing loss.
If these issues were to become more severe, he might even have to undergo surgery in the future.
A doctor the family consulted at the National University Hospital (NUH) informed them of a new medication named Vosoritide, also known as Voxzogo.
The drug stimulates bone growth and has been approved by the United States Food & Drug Administration (FDA) for individuals aged 5 years and older.
European Medicines Agency (EMA) has also approved it for children aged 2 years and older.
According to OP, the medicine is the only approved treatment for dwarfism and can boost her baby’s growth by 20 to 30cm if he takes it until he is 18.
To back her findings, she also shared a post by a mother from the United States whose son had a growth spurt of 23cm after taking Voxzogo for four years.
With all of the medicine’s advantages, it seemed like the answer to the family’s prayers.
However, their struggles did not end there.
Putting their baby on Voxzogo for one year alone would set the family back S$420,000, and he would have to be on it until the age of 18.
In a statement on GIVE.asia as part of their crowdfunding campaign, the family revealed that the medication would cost S$40,000 to S$50,000 a month.
All in all, it would take a total of S$7 million for the full duration of the treatment.
That said, the family is looking to raise only S$1.5 million in donations for their baby, which equals three years of dwarfism medicine.
The reason they gave is that they wanted to appeal to the Ministry of Health (MOH) to start subsidising Voxzogo.
Currently, the ministry does not have it on its list of drugs approved for subsidy.
The baby’s condition is unfortunate, and we applaud his family’s bravery and determination in navigating such difficult circumstances.
Hopefully, he can get the medical care he deserves and that his family can reach their goal as soon as possible.
If you would like to find out more or donate, you can check out OP’s post here or the crowdfunding page.
Have news you must share? Get in touch with us via email at news@mustsharenews.com.
Featured image adapted from Facebook and GIVE.asia.
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