Fiji woman honours late mother with inaugural ‘Walk to Defeat MND’

Motor Neurone Disease refers to a group of conditions that affect motor neurons, the nerve cells responsible for controlling voluntary muscle movements, according to MND New Zealand.

To raise awareness of this disease, Donna McKay-Ah Sam from Fiji organises a ‘Walk to Defeat MND’ in Rakaia, outside Christchurch, in memory of her late mother, Delia, 55, who passed away last year after a 12-month battle with MND.

“The reason why I organised this was in honour of my mum … mum was a person who loved to bring people together, so this was one way that we could honour her and we know that bringing everyone together for this event, it was something that she would have really loved,” McKay-Ah Sam tells PMN Fiji host Nemai Tagicakibau.

The walk was part of a nationwide initiative that started last month in the Rakaia community, along with Auckland, Wellington, and Christchurch. Family and friends in Fiji and Australia also marked the event.

“That was my first event to organise. I just wanted to do my part in giving back to the MND community, and for us going through it, we knew what it’s like, especially trying to get that support.

“We’re planning on making it a yearly event and trying to get more people involved.”

McKay-Ah Sam describes the early signs of MND that her mother experienced, noting the difficulty doctors had in diagnosing the disease.

“So for mum, she kept dropping things. Her grip and everything was quite weak. She started losing balance.

“She started getting numbness in her limbs. It started off in her arms, and then that lasted over two years. Doctors still couldn’t understand what was wrong with her.

“And then it took two really bad falls in order for them to do further investigating, and then after her second fall, that’s when they did more nerve testing and then found out exactly what it was. It’s quite a hard disease to diagnose.

Watch Donna McKay-Ah Sam's full interview on PMN Fiji below.

“Usually you go through a lot of nerve testing and neurological testing in order to find out what it is exactly,” McKay-Ah Sam, who moved to Rakaia from Auckland after getting married to help look after her mother, says.

MND affects muscles and nerves, leading to loss of mobility and the need for round-the-clock care.

McKay-Ah Sam and her family ensured their mother was comfortable at home, supported by relatives and close friends.

“We all had to pitch in. Our house even turned into a hospital. Throughout the 24 hours a day, there was always someone with her.

“It was either my dad, myself, my siblings, or her sister who came over to live with us from Fiji as well, and one of mum’s good friends.

Family and friends from New Zealand, Australia, and Fiji join the recent 'Walk to Defeat MND' organised by Donna McKay-Ah Sam. Photo/Facebook

“They helped look after her, which was really amazing because that’s the most important thing is getting that support.”

McKay-Ah Sam also addresses the causes of MND, saying that only about 10 per cent of cases are linked to inherited gene mutations, while the other 90 per cent are associated with environmental factors and immune-mediated damage.

“In New Zealand, about 400 people are suffering from motor neurone disease at this point,” McKay-Ah Sam says.

The 36-year-old’s advice to the community is to be aware of early symptoms, seek support, and speak up.

“Look out for those early symptoms. Don’t take things lightly. If you know you’re suffering from it, push," she says.

Donna McKay-Ah Sam, left, and her late mother Delia Florian-McKay. Photo/Supplied

“Awareness and understanding of MND can help families access the right support that they need, especially with our Pasifika people.

“A message to everyone is that just try to be open about it. In some places, like they say it’s time to talk about things, but open conversations about MND can improve knowledge and reduce barriers for care. And always reach out to your community.

“Everyone’s willing to support. There’s no shame in asking for help or anything. And for us Pacific Islanders, we must learn to always speak up whenever we’re facing challenges.”

Encouraged by the event's success, McKay-Ah Sam plans to make the walk an annual occasion in Rakaia every February, turning it into a family-friendly gathering to increase awareness, especially among Pacific communities.

A Walk to Defeat MND event in Aotearoa. Photo/MND New Zealand