In July 2022, Jayden Toh’s family launched a public crowdfunding campaign on Give.Asia in order to raise $1.5 million to treat Jayden’s achondroplasia.
Achondroplasia is a genetic condition that affects a protein in the body called the fibroblast growth factor receptor, which in turn, slows down the growth of bone in the cartilage of the growth plate.
As a result, the patient will have disproportionate dwarfism, wherein they will possess short statures as adults.
It can also cause curved lower spines, nerve compressions in adolescence, bowed lower legs, poor muscle tone and loose joints, sleep apnea (periods during sleep when the child stops breathing), and loss of bowel and bladder control.
Statistically speaking, one in every 25,000 infants is afflicted with this genetic disorder.
Not only are Jayden’s parents concerned about his health, but they are also worried that their son might be discriminated against because of his differences.
Rejected After Admission
Although Jayden is barely one year old, he has already been confronted with the discrimination for the first time.
Jayden’s father, 42-year-old Lawrence Toh told 8world News that his son had been refused admission at a kindergarten after the higher management learned about his genetic condition.
Thinking that Jayden had secured a place at the kindergarten that his older sister was placed in, Lawrence felt that it was only right if the kindergarten was mentally prepared for Jayden’s medical condition, so he called the principal to inform him about it.
Five minutes later, Lawrence received a depressing reply.
The principal called back and said that the kindergarten was very popular, and a lot of parents have applied, so they were at full capacity.
Confused, Lawrence brought up how the principal previously said that Jayden would be guaranteed a spot because his older sister was attending there.
The principal told him that the higher-ups had discussed among themselves and said that they could not accept Jayden because of his medical condition.
The Thoughts of Jayden’s Patents
Jayden still has a long life ahead of him. His parents hope that schools and society can be more tolerant and make the best of his situation.
Jayden’s mother, 37-year-old Amanda Tan Peihong, pointed out her son was merely going to be shorter than others. He is not attached to a feeding tube, nor does he require a wheelchair to get around.
“As a principal, he should have more compassion, and be more encouraging towards [Jayden]. We don’t want him to stay at home all day, we want him to interact and make friends,” she added.
Currently, the parents are looking for a school that can accept his medical condition.
There will be times where Jayden will have trouble climbing the stairs, so his classroom needs to be on the first floor when he enters primary school. He might even need a table and chair that is lower.
As Ms Tan spoke about her son’s medical condition, she said with a sigh, “My greatest wish is that he can grow up properly, without experiencing too much pain or problems.”
She hopes that he can be treated fairly by society, but she is aware that this society can be cruel, so it will definitely be an uphill battle.
“I need to teach him how to stay strong, how to deal with bullies, and how to stand up for himself. This will be a very long road, and I am learning too.”
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Donate to Jayden’s Cause
As previously mentioned, Jayden’s parents have started a crowdfunding campaign to treat Jayden’s achondroplasia.
Jayden has been recommended to take a new drug called Vosoritide, otherwise known as Voxzogo, which can help stimulate bone growth in those with his medical condition.
It has been approved by the Food and Drug Administration (FDA), as well as the European Medicines Agency (EMA) for children aged two and older.
The results from the Phase 3 trials have been promising: individuals on the treatment have shown an annual growth velocity of 1.57cm every year.
According to the National University Hospital’s letter, the greatest benefit of Voxzogo is that it will “lessen the severity of his medical complications” and improve his quality of life tremendously.
There is also the possibility of Jayden being taller by 20 to 30cm than males with dwarfism, who typically average around 131cm in height as adults.
Alas, the drug is extremely expensive, costing $40,000 to $50,000 per month, and it is not under the list of subsidised medications in Singapore.
The doctor’s letter estimated that it will cost S$420,000 per year.
Since the medicine helps stimulate bone growth, it will be a long-term treatment. For the best results, Jayden has to keep receiving the treatment until he is 18 years old.
As of right now, it is more important that Jayden receives the treatment as soon as he plausibly can—since most development milestones happen during early childhood—so his parents are trying to raise S$1.5 million to fund the first three years of Jayden’s treatment.
While they are appealing to the government in hopes that they can alleviate a part of the financial burden, they cannot afford to wait for Voxzogo to enter the list of subsidised drugs as it will take years.
Although Jayden is only nine months old and the symptoms of his genetic disorder are faint, they are already perceivable.
There is a slight curve in his spine, his limbs are shorter than infants his age, and his risk of sleep apnea is 40 times higher than an average baby.
In order to reduce the symptoms, Jayden has follow-up consultations and physiotherapy at National University Hospital every month.
Under the hospital’s suggestion, they have bought some gamepads that help to straighten Jayden’s back, and his mother massages him every day.
$396,172 have been raised for Jayden Toh thus far.
If you wish to donate, you can do so at his Give.Asia page or transfer the cash directly to the bank account that Ms Tan has set up. The details can be found on her Facebook post.
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Featured Image: Give Asia
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