Like many children his age, Neil Singh hopes to be a YouTube star when he grows up.
Confident and with a big personality packaged in a 110cm frame, the 10-year-old loves nothing more than curating content and gaming videos for his YouTube channel and gaining new subscribers. "Maybe I would like my own talk show one day; it would be about planes," he enthuses.
'But behind his on-screen energy, Neil tires easily. For the past seven years, he's had to swallow a daily dose of steroids at breakfast. They stunt his growth, yet they keep him alive, and help his weak and slowly wasting muscles to function.
Born with Duchenne muscular dystrophy (DMD) – a progressive and genetic muscle disease that affects approximately one out of every 3600 baby boys – Neil now has a power wheelchair that he uses at school and for long distances.
His parents, dad Kuldeep Singh, 40, and mum Yasha Aggarwal, 37, must keep an eye on his activities throughout the day so they can manage his fatigue. The year-six student has a day off school every Wednesday, to allow enough rest to recover.
Sharing their story with the Weekly to help raise awareness about rare disorders in New Zealand, the couple describe their brave son as a chatterbox who is very funny.
"He is full of life!" smiles Kuldeep. "Although his body does not allow him, he still wants to explore a lot of things. Like in the holidays, he wanted to make videos of all the train stations in Auckland for his YouTube channel [Chromatic Gamer].
"He has an amazing communication ability. He has overcome anxiety and has polished delivery skills, and can use all his stories to connect with any type of audience."
Neil was three when his daycare teachers commented to his parents that he wasn't as active as other children.
"His teacher used to say we should get him checked and we thought she was crazy," recalls Kuldeep. "Then he started eating crayons and sand, so we got an appointment with a paediatric neurologist at Starship Children's hospital."
Kuldeep and Yasha thought Neil might have Pica disease, an eating disorder where a person eats things not usually considered food.
The following week, Yasha went to the follow-up appointment to receive Neil's blood test results.
"That afternoon, Yasha called me from the hospital and she was crying," tells Kuldeep. "When I got there, they told us Neil had DMD. My next question was, 'What can we do about this?', but they were like, there is no cure. The most frustrating part as a parent was not being able to help him."
In need of support, Starship referred the Kiwi Indian couple to the Muscular Dystrophy Association of New Zealand (MDANZ), where they met other parents who knew exactly what they were going through.
"They knew everything, every emotion without us mentioning it," says Kuldeep. "MDANZ has support workers who go with us to school, and explain to Neil's class about his condition and needs."
While there is some hope for DMD sufferers in gene therapy – which offers the possibility of a permanent cure triggered by a single-gene defect – Kuldeep says most clinical trials are only offered overseas.
In 2019, Neil was travelling each month to take part in one in Australia, before Covid hit and borders closed.
In the meantime, he takes Deflazacort, a steroid to reduce inflammation and change the way his immune system works. His parents believe it has fewer side-effects than the publicly funded steroid, so they are grateful they can pay for it themselves.
They've also had to modify their Auckland home for Neil's powerchair and install a ceiling hoist for moving Neil from his room to other parts of the house, like the bathroom, without using the cumbersome wheelchair.
"The powerchair is approximately 150kg, so we also had to buy a new van and modify it for his needs. How do other families who don't have the financial means manage though?" muses Kuldeep.
For now, though, Neil is taking joy in being a big brother to the family's new addition, three-month-old baby son Kabir.
Kuldeep says the couple' smain concern about having another son was there would be a high chance of him also having a genetic disorder.
"But the support worker from MDANZ told us about an IVF process to limit this, where a mother's eggs are checked to confirm if they are affected or not. And unaffected ones can then be implanted."
While Neil is aware that his condition will progress, the family prefers not to look too far ahead.
"We cannot control a lot of factors in this case," says his doting dad. "However, we can still have fun, as in the end it is quality of life that matters, not the quantity.
"We just want to encourage him to do what he likes and let him explore and find his own limitations, rather than us deciding what he can and cannot do.
"I really wish he could be part of some talk show for kids on the radio, so everyone can find out how amazing he is."
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