For many parents, their greatest hope is simply for their child to grow up healthily and live life to the fullest.
So when baby Jayden’s parents discovered he was born with a rare genetic bone disorder called achondroplasia, better known as dwarfism, they were worried.
Now at 10 months old, his parents shared in an interview with 8World News that he has already faced his first hurdle — kindergarten enrolment.
When his parents informed a kindergarten about his condition, the school allegedly rejected him within five minutes.
This disappointed his parents greatly, as they hoped people would have more empathy.
Jayden had initially secured a place in his elder sister’s kindergarten. When Jayden’s parents received a confirmed diagnosis, his father sent an email to inform the school principal about his condition so they would be mentally prepared.
However, within five minutes, the principal called.
Speaking to 8World News, his father said the principal seemed to be giving excuses as they suddenly said there were no vacancies left for Jayden.
Undeterred, his father immediately pointed out the discrepancy, saying they had been promised a space earlier.
The principal then explained that after discussing with the school’s higher-ups, they decided they could not accept Jayden because of his condition.
Jayden’s parents were greatly disappointed by such discrimination. His father elaborated that their child does not need special care, such as being in a wheelchair or needing feeding tubes.
He would only have a smaller form compared to others.
Jaden’s father stressed that the preschool could have been more loving and encouraging since it is an institution meant to nurture toddlers and children.
After all, Jayden shouldn’t have to stay home all day due to his condition. His parents hoped he could socialise and make friends like other kids.
Jayden’s kindergarten enrollment is not the only challenge his parents are trying to overcome. If Jayden’s condition goes untreated, his final adult height is estimated to be around 1.3m.
He faces several health complications, including spinal deformity, bowing of legs, back pain, bladder or bowel dysfunction, and hearing loss.
But there is hope. Back in July, they shared that doctors have informed them about a drug, Voczogo, that treats Jayden’s condition and facilitates bone growth.
However, the drug is costly. It is also not on the Ministry of Health’s approved list of drugs for subsidy. They are now crowdfunding for Jayden’s medication.
They hope to raise a total of S$1.5 million, equating to three years of dwarfism medication.
Jayden’s mother shared that Voczogo is the only approved dwarfism treatment and can stimulate growth by 20cm to 30cm. For it to be effective, Jayden must take the medicine until he is 18.
During the 8World News interview, Jayden’s parents understood that while things seem challenging now, it is only the beginning for Jayden.
Now, they hope they can raise enough funds as soon as possible to start his treatment.
Speaking in Mandarin, his mother shared that her biggest hope is that he can grow up well without so much suffering and pain.
She acknowledged that the world can be cruel but wishes he would be treated without discrimination and given equal opportunities in his life.
It is a long journey, she said, and she, too, is learning along the way.
If Jayden’s story resonates with you, you can help fund Jayden’s medication by donating to the Give.Asia page here.
Have news you must share? Get in touch with us via email at news@mustsharenews.com.
Featured image adapted from Give.Asia and 8World News on Facebook.
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