Jess, Eli, and Grayson Barnes. Photo / Michael Cunningham
Jess, Eli, and Grayson Barnes. Photo / Michael Cunningham
Whangārei's Hatea Loop will be occupied by 5-year-old Eli Barnes on Saturday morning as he raises funds for the Muscular Dystrophy Association of New Zealand.
Eli is participating in the Roll 1k for MDA campaign which is a fundraising and awareness campaign that relies on supporters rolling 1km on any kind of wheels and fundraising among family and friends.
Eli and his mother Jess Barnes have set $5000 as their goal and have received $575 in donations so far.
Barnes said as Northland would still be under alert level 2 restrictions, she could not organise more activities or sausage sizzle to complement the fundraiser.
Eli, 5, and Grayson Barnes. Photo / Michael Cunningham
"What we are going to do is, depending on how tired Eli is, he will roll a kilometre on his bike or wheelchair. We are looking for donations and sponsors to help with our cause.
"There should be at least five of us, but we hope there are more people joining us on the day.
"Everyone is more than welcome and we will be practising safe distancing."
Barnes was recently approached by Attitude TV, which will be sending a camera crew following Eli, to film a documentary.
"The documentary will present a day in the life of Eli and is focused on his Muscular Dystrophy," said Barnes.
Barnes said the camera crew would be present at the fundraiser and invited anyone with a similar condition to join them on Saturday.
Muscular dystrophy (MD) is a group of muscle diseases that weaken the musculoskeletal system and affect a person's ability to walk. These are genetic conditions and can be inherited or an individual may be the first one in their family affected.
Muscular dystrophies are characterised by progressive skeletal muscle weakness, defects in muscle proteins, and the death of muscle cells and tissue.
There are several defined types of MD that are diagnosed based on the specific presentation of muscle weakness, these can now generally be confirmed by gene tests for the specific genetic fault where an error in a gene is what is causing the pattern of weakness.
It is a rare condition with three different types, of which two affect about 1 in 8000 people and the third only 1 in 100,000.
Roll 1k for MDA is a fundraising and awareness campaign that relies on the organisation's supporters rolling 1km on any kind of wheels and fundraising amongst family and friends. One could roll 1km on a wheelchair, electric scooter, skateboard, roller skates, pushbike ... or whatever creative wheel idea you can come up with.
Eli Barnes, 5, will roll a kilometre on his bike to raise funds for the Muscular Dystrophy New Zealand. Photo / Michael Cunningham
By Rolling 1k for MDA, participants will be helping New Zealanders living with muscular dystrophy. Every roll one makes, every dollar one raises, ensures Muscular Dystrophy NZ members benefit from their essential Fieldworker Service. Roll 1k for MDA started on Monday, September 20, and rolls through to Sunday, September 26.
You can help and donate funds to Eli's cause at https://www.roll1kformda.org.nz/fundraising/jess-barnes-one-agency
