Our Members - Their Stories

MDANZ members share their personal stories of living with a Muscular Dystrophy condition. 

Eli Barnes is ready to roll for our annual appeal

05 August 2022

Ready, Set, Roll

We are continuing with our Roll1kforMDA challenge again this year for our national annual appeal. It’s wheelie fun, interactive, and even better – anyoneand everyonecan take part. MDANZ Northern Region member Eli Barnes is the face of Roll 1k for MDA. His parents mum Jess Barnes anddad Grayson Barnes are sharing their story to help raise awareness and funds

By Kristin Cross

When you meet Eli Barnes for the first time you can’t help but be enamored by the young boy. He has a cheekiness and zest for life that you fall in love with.  

Eli has Congenital Myopathy, a group of muscular disorders that appear at birth or in infancy. His condition is so rare there are only 29 cases worldwide.

Eli was diagnosed at birth. Sadly, there is no cure, so Eli's family do their best to manage his symptoms. This includes his protective and loving big brother Cameron, his dad and carer Grayson and his mum Jess, a full-time real estate agent.

“We tried really hard to get pregnant and I had no idea that he would be born with any sort of muscular dystrophy. As soon as he was born the midwife noticed he was floppy, so he went through a lot of tests. When his diagnosis came through, we had some nurses talk about funeral brochures, so we were really preparing for a short time with Eli”, Jess says.

“That’s when we changed tack and decided to make the most of what time we have. We are passionate about hitting as many milestones as we can, giving him as many life experiences, and trying and enjoy life together for as long as possible.”

“We don’t know what the future holds for Eli and that’s the scariest thing. Because his condition is progressive, we just want to celebrate him as much as we can – while we still can.”

Now six, Eli is in his first year of primary school. He began school with his dad Grayson as his teacher aide and full-time carer. Like two peas in a pod, both share a love for music and display the same quirky sense of humour.

“He gets excited going to school but because of his disability his fine motor skills are heavily impacted, so even holding a pen can be exhausting. Eli sometimes has a hard time picking up on social queues, so making friends can be difficult, and I have been guiding him to navigate those social encounters”, Grayson says. “But he has improved a lot and has made many friends even after I ceased being his teacher aide.”

“To accept Eli’s condition has been a long and constant learning curve. I’ve struggled with Eli’s difficulties. I don’t think that’ll change. It’s ongoing. It takes a lot of strength from the whole family, just for accepting him for who he is. Just like we would accept anyone for who they choose to be.”

Grayson and Jess try to get Eli out to as many things as they can. “I think it’s really important when you have a disability to attempt to get out there and be part of the community. It can be easier just to stay at home because everything is there, but we really push him to get out there and try new things”, Jess says.

He loves to be outside racing on his trike even though compared to a ‘normal child’ Eli’s strength and stamina are very low. But his parents encourage him to push his legs in the hopes that building those muscles is going to eventually lead to him walking and running.

Eli, Cameron, Grayson, and Jess are sharing their story as part of the Roll 1k for MDA annual appeal, to help raise awareness of Kiwis living with neuromuscular conditions.

They’re grateful to everyone who rolls with the campaign and donates to the appeal. For the Barnes family, this will be their second time signing up to do the challenge and word on the street is that Eli has started his training already!

“Thank you for supporting families like ours, your participation and any donation means a lot to us. “