Ready, Set, Roll
This year’s national annual appeal is something wheelie fun, interactive, and even better – anyone and everyone can take part. MDANZ Northern Region member Neil Singh is the face of Roll 1k for MDA. His parents mum Yasha Aggarwal and dad Kuldeep Singh are sharing their story to help raise awareness and funds.
By Melanie Louden
When you meet Neil Singh for the first time you can’t help but be blown away by this young man.
He’s 10 years old, yet he has the confidence of a wise and inquisitive person.
He’s only 109.5cm tall, yet he commands the room with his charming, extrovert personality. Neil loves to ask questions and can hold a meaningful conversation with any one of any age.
He has a love of trains, music and Lego, Pokemon and Beyblades.
He also has Duchenne muscular dystrophy - a progressive and genetic muscle disease that affects approximately 1 out of every 3600 baby boys.
It affects many parts of the body, which results in deterioration of the skeletal, heart and lung muscles.
When Neil wasn’t reaching his toddler milestones, mum Yasha Aggarwal and dad Kuldeep Singh knew something wasn’t right.
“He was late in standing, walking, running from the get-go, but every time we were reassured by health professionals that he was doing things in a normal time frame, and we did not need to be worried about his development,” Yasha says.
They asked again to see a doctor at Starship Hospital and this time they happened to meet with a pediatrician who was familiar with Duchenne, although Yasha and Kuldeep didn’t know that at the time.
Days later, when it was time to go back to Starship to get the results of the tests, Yasha took Neil to the appointment by herself only to realise she was going to be seen by the neuromuscular clinic instead of general pediatrics.
"Things did not feel right, and my concerns grew while I waited. It was at its peak when they said that Neil can go to the playroom while I discuss the results with the doctors, who then told me the diagnosis. It was Duchenne.
“I was without Kuldeep listening to the diagnosis. I was not told to bring a support person.
“I felt sad, angry and was in disbelief. They told us that our beautiful boy had a terrible condition.”
Yasha was given some space to take in the news and call her husband, who rushed to Starship to be with his family.
“We sat, holding each other, crying and trying to pull ourselves together before we saw Neil again,” she says.
In need of support, Yasha and Kuldeep reached out to the Muscular Dystrophy Association of New Zealand where they met other parents who knew what they were going through.
“They knew everything, every emotion without us mentioning it,” the couple say.
“MDANZ has held our hand and helped us with various stages of Neil’s condition, getting information. The Fieldworkers have been available as a support person when we needed them.”
Neil now has a power wheelchair that he uses at school and for long distances.
He gets tired easily and his parents must watch his activities throughout the day so they can manage his fatigue.
“He would love to play soccer, or just run around, and play video games with his buddies. Unfortunately, regular soccer is not an option. This is due to his reduced ability to run like other children, fatigue and, most importantly, safety.
“His hands get tired if he plays video games, his legs get tired if he runs around.”
‘Fatigue management’ played a big part in Neil starting school and while Neil was very excited about it, his parents were quite anxious.
However, the move to school life couldn’t have gone better with the school being very engaged and approachable, and doing an excellent job of communicating with Yasha and Kuldeep, which helped everyone settle in.
Five years down the track and Neil “loves” school, with art and music being his favourite activities.
“He has a close group of friends that he looks forward to meeting every day. He is performing well and reaching his goals.”
Yasha and Kuldeep say Neil is aware that his condition will progress.
“He talks about not being able to walk one day, which is heartbreaking for him and us.”
However, the family is staying strong and united.
“We are taking each day as it comes, and we prefer not to look too far ahead in the future.
“The prognosis is not hidden but we’d rather not think about it.”
Roll 1k for MDA
Roll 1k for MDA is a fundraising and awareness campaign that relies on our supporters rolling 1km on any kind of wheels and fundraising amongst family and friends. 
Simply head over to the Roll 1k for MDA website to register and create your own fundraising page. Then spread the word via email and social media, asking people to either sign up to fundraise themselves, or donate to your fundraising page.
You could roll 1km on a wheelchair, electric scooter, skateboard, roller skates, push bike … or whatever creative wheel idea you can come up with.
Spend the months of August and September gathering as many donations as you can – and once you’ve raised $50 you’ll receive a free Roll 1k for MDA t-shirt. Complete your roll during the week of September 20-26.
All the funds raised will go to the region they were collected in to contribute to our vital Fieldwork Service which provides essential support to members and their families.
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For more information about Roll 1k for MDA please contact:
Kristin Cross
Fundraising and Partnerships Advisor
Muscular Dystrophy Association of New Zealand
[email protected]