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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,” Jess says. “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.” He loves to be outside racing on his trike even though compared to a ‘normal child’ Eli’s strength and stamina are very low. His parents encourage him to push his legs in the hope that building those muscles will 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 Kiwi’s living with neuromuscular conditions. They’re grateful to everyone who rolls with the campaign and donates to the appeal. This is the Barnes family’s second time taking part in 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.“ Photos by Hamish Melville. When you meet Eli Barnes for the first time you can’t help but be enamoured 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, dad and carer Grayson, and 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,” Jess says. “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. “That’s when we changed tack and decided to make the most of it. We are passionate about hitting as many milestones as we can, giving him as many life experiences, and trying to 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, they both share a love for music and display the same quirky sense of humor. “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,” Grayson says. “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 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.”