When Co Down woman Nic Russell learned she had Parkinson's disease a week before Christmas 2019, the 46-year-old felt scared, but relieved to finally put a name on the symptoms that had been bothering her for months.
She had faced worse, having already battled aggressive cancer, the loss of her toddler daughter to the same disease and a degenerative heart condition that had killed her father.
Despite facing several challenges that alone would crush a normal person, Nic - who was brought up in Cranfield, on the shores of Carlingford Lough - says her strong spirit has carried her through.
Nic, who lives in Auckland with her son Conor (20) and is a health and social issues campaigner, says in the darkest days of grief and illness she turned to nature for solace, because it reminded her of home.
"I grew up on the shores of Carlingford Lough," she says. "My childhood was idyllic. My parents John and Patricia Russell owned the Cranfield House Hotel at the time. There were always lots of people coming and going. We were very much into going rambling in the Mourne Mountains and going swimming in the Lough and doing lots of outdoors activities. We had great friends, the community was lovely. So I have very fond memories and I still have very strong connections with the people I grew up with."
"I went to London at 19 and worked at Middlesex Hospital as a nursery nurse and made my way to New Zealand at 23," she says. "I met my ex-husband in New Zealand and we came back home for a few years. My son Conor was born in Northern Ireland and my daughter Kenzie was born in New Zealand."
The family were enjoying their new life in New Zealand when in 2005 two-and-a-half-year-old Kenzie started to stumble and fall, screaming in pain.
"Kenzie was a very feisty little girl," she says. "She was a gregarious and funny child. She was the more outgoing of the two children. In 2005 even though she was a feisty little thing, she started to fall over and she was crying in extreme pain, which was not like her. She could throw a temper tantrum when she didn't get her own way, but this was different.
"We had numerous trips to the doctor where we felt we were being ignored and dismissed. They would say it was a behavioural issue and it's nothing. But as a mum I knew, so I took her off to Starship Hospital where she stayed for three weeks. Over that timeframe she went from stumbling and falling and being in acute pain to being completely paralysed and on a morphine pump.
"They eventually did a full body MRI after three weeks and it turned out she had a tumour at the top of her spine which was causing all her symptoms due to spinal cord compression. It was extremely traumatic to hear.
"It was a hugely traumatic time. But I had to just take it a day at a time and believe that she would get better.
"Three months after Kenzie was diagnosed, I was diagnosed with aggressive stage three breast cancer. My marriage broke up in that period also and I had lost a lot of weight which people had put down to stress. I was in the shower with Kenzie in the hospital and I looked down and I could see a lump. I had lost so much weight it was very clear to see it there. I went off to have a mammogram and a biopsy and, of course, it turned out it was breast cancer.
"Mum and Dad came down from home and we had friends here supporting us. I couldn't be in the hospital with Kenzie, so Mum had to be with her while I was getting treatment. It was amazing how life became normal, how something very abnormal becomes normal all of a sudden.
"I ended up adapting to what I knew. I became institutionalised very quickly because our lives revolved around medical appointments and being at the hospital. And I had to make sure Conor had one on one time with me and make sure he wasn't left out of the mix."
"I looked at Kenzie, who had been disabled as a result of her cancer and yes, I lost my breasts, but it didn't impact on my ability to function and enjoy my life, with sport. I could still function and enjoy that stuff. I had that perspective because I had a comparison. Most people, as adults who have a cancer diagnosis, are just thrown into it and are thinking about themselves."
The family were battling through their immense challenges when tragedy struck at the end of 2005.
"Towards the end of that year Kenzie was beginning to walk with a walking aid," she says. "She started off being paralysed but had managed to use the walker. Her last MRI scan before Christmas showed that the tumour site was clear, so she was due to have radiotherapy in the New Year. But cancer had another plan for us.
"Being immuno-suppressed because of the cancer, Kenzie caught an infection which turned to septicemia and in the last week of December and she died of multi-organ failure.
"Grief just brought me to my knees. I didn't think I would get over it. It just cut me off at the knees completely. It was the most horrendous pain that you could think about, physical or mental. It's not the natural order of things, a parent losing a child at any age. It was just devastating.
"But I looked at Conor and he was five-years-old and he needed me more than anything. I didn't want this to ruin his childhood and the man he would become. I knew I needed to rebuild our shattered lives into something for him and for me. So I went back to university and got two degrees and started to create a better life for us down here in New Zealand."
Nic channelled the enormous grief that had consumed her life into a vision for a fitting legacy that would reflect her daughter's life.
"I knew that I had to get support for the mental trauma that I had gone through and I had a wonderful psychotherapist that supported me and I wouldn't be here if it wasn't for her. I looked at the fact that there was nothing to support families affected by serious illness or bereavement with regards to their mental health. So I had the vision for Kenzie's Gift charity.
"We established it in 2008 with the vision of supporting young Kiwis and their families who were facing serious illness or bereavement. We provided one-on-one therapy with mental health professionals. We provide resources and packs in conjunction with psychologists to help them navigate their journey. And that has all helped us create a lasting legacy."
Nic threw herself into sport, combining that love with her love of nature and competed in many outdoors pursuits to raise money in her daughter's name. But again, her body had other ideas for the future and she was diagnosed with the same heart condition that killed her father at just 68.
"I started off doing an ocean swim series," she says. "I did the Auckland Marathon, an eight-hour adventure race, skydiving, rafting events and other things. I found it was a coping mechanism for me.
"How I found out that my heart was failing was when I was training for the iron distance event back in 2012. I was really struggling with the running, but I kept going. Because when you're training for sport, you're told that it's all in your head and you can push through anything, that nothing is impossible. I felt that I should be pushing past it and I'd be alright.
"At the start of the race I just felt that something wasn't right and I wasn't ready for it. And then I just freaked out during the swim. Two months later I was in the cardiologists office and he told me that the reason I was struggling with sport was that my heart function has dropped by 11%. He said it was Hypertrophic Cardiomyopathy - a condition in which a portion of the heart becomes thickened. Your heart starts to stiffen and it means that it won't pump blood around the body as you need it, so you end up getting fatigued and other complications start to arise.
"My dad died of the same condition aged 68 back in 2016. He was getting treatment for it. And his sister also died from complications from it at 70-years-old. So it runs in the family.
"I know that this is chronic and degenerative. It was life altering for me because I was so into my sport and how I coped and looked after my mental health.
"I'm now on medication to preserve the function of the heart and that has slowed me down even more. Because of that my big sporting challenges were curtailed. So instead of running, I walk, I got an electric bike.
"I could have a pity party about the whole thing, but I can't change it. So I focus on what I can do within the realms of keeping my body functioning as much as I can. So I just changed tact."
And fate was not finished with her yet. Nic says she was 'shuffling' and seemed to be in constant pain. A tremor developed in her leg and hands, she was having trouble swallowing and was often choking. Before Christmas last year she was diagnosed with Parkinson's disease.
"The Parkison's diagnosis has been more scary," she says. "I had symptoms going on for around four years. I was shuffling a lot, being really stiff and really sore. I had chronic inflammation. They thought it was a rheumatoid issue. I was struggling with swallowing and had nearly choked about six times. The dexterity in my hands was going and they were both feeling quite numb and I had a tremor in my right leg.
"When I was diagnosed I actually felt validated because I was constantly going backwards and forwards to specialists, maybe thinking that it was all in my head. It wasn't something that I wanted to hear but they started me on medication the symptoms abated and my body started to function a lot better. It was a little bit of relief that we had actually got to the bottom of it.
"But again, if you think too far to the future, it is a bit unnerving because I am on my own and the income that comes in is mine and if that goes, what then? But I have wonderful supportive employers and that has made me thankful for small mercies.
After all she has been through, Nic says she has quite a unique perspective on life.
"I just deal with each day as it comes," she says. "If I looked to the future it's too scary, to be honest. I will just have to deal with that when it comes. The Parkinson's disease diagnosis was quite difficult to get my head around, because my concern is that I can work. And I wonder what that is going to be like in five or 10 years. But again I can't think that way. I have to think that I'm functioning well now.
"What you realise is that accepting is the thing. I can't control what my body is doing. I couldn't control Kenzie dying. I think that you get to the point where you accept what you cannot control. You don't say 'why me?' because why not me? Bad things happen to good people all the time and life can be very hard. Some people are pure lucky and some get just bad luck. For me I've just had pure bad luck. But with that comes insights. Kenzie only got to be here for three years, somehow she didn't get to have a life and I did, so for me I would be dishonouring her legacy and her memory to not live my life to the fullest."
Nic established the 'Dear Grief' social media campaign to encourage people to talk about death and has made moves to enlist Prince William - who met Kenzie when she was getting treatment in hospital - to help promote it.
She says, despite being through challenges that may have well broken anyone else, she still believes in the strength of the human spirit.
"There are worse things than death," she says. "You could have a beautiful death. When Kenzie died, she died in my arms and I don't look at it as that she lost her battle, I see it as her last show of strength and courage to let go of a body that could no longer do what she needed it to do.
"Many of us are stuck in bodies that can't do what we need them to do. The human spirit is stronger than what we give it credit for. People tell me that they couldn't cope with what I had been through, and I think actually you probably could. Because whenever you've got to it's different. You have two choices -you either do or you don't."