Almost like lightning, Nicola Reeves’ Multiple Sclerosis never hits the same place twice. Instead it’s very active, striking different spots and leaving a permanent mark.
The 35-year-old was diagnosed with MS in October 2010, and since then has suffered six relapses in the past seven years.
“I have a lot of sensation damage,” says Nicola. “I can’t feel hot or cold sensations in my legs, I have limited sight in one of my eyes, numbness in my face and a pins and needles sensation all over my body.
“Since my first attack I also usually get Lhermitte, which is when you bend your head forward and get shocks down your spine and throughout your body.”
Multiple Sclerosis is a nerve system disease, where the damage impairs certain signals from the brain and spine, causing deficiency in sensation, physical movement or mental actions.
Left: Nicola and her son Dominic. Right: Four generations of Reeves, Glenys Body, mum Robyn Reeves, Nicola and Nicola’s daughter Madison.
“If you imagine that you are controlled by several brightly coloured electrical cords which all control different things, MS specifically attacks the outer layer called myelin, which goes down your spinal cord. This means signals struggle to get to different parts of the body.”
Each person has different symptoms – they may be similar, but not everyone is exactly the same as the next.
Her doctor first thought she had a slipped disk, however after multiple tests, including blood tests, a lumbar puncture and MRI scans, a month later she was diagnosed with MS.
After being put on Copaxone, she was attack-free in 2011, 2012 and 2013, but she suffered serious side effects.
“I used to get big red welts on my body and they were hot and would swell,” explains Nicola, “so I was put on some other drugs and they worked quite well, but I had to inject myself in the leg.
“Sometimes I didn’t want to do it, but I had to psyche myself up.”
She struggled to come to terms with her MS, living in a haze of exhaustion and the fear of not knowing when the next attack would take place.
“I went through quite bad depression after 2012 because I didn’t know what was going to happen and I was in denial. I have been for quite some time.
“In my head I was still convinced that I was going to be fine and I put on a strong face. But it wasn’t until I had two attacks after that, and my Neurologist started saying that it was very active and he was concerned, that I started to snap out of this state.
“I knew I couldn’t actually ignore this anymore.”
In 2017 she found out she was pregnant with her third child, and was told by her doctor that MS usually goes dormant during this time. However, she had a relapse at 33 weeks, and had to come to terms with the fact that she may possibly become partially blind.
“It was terrifying,” she admits. “I wasn’t on any modifying drugs at the time because of the baby and my right eye completely went, leaving me blind.
“Fortunately, in a couple of weeks, my right eye fully recovered and there was no permanent damage. Pregnancy does this strange thing where it acts as a barrier to MS attacks.”
Permanent on-going disabilities make it difficult for her to carry out normal daily activities, like keeping up with her young family.
Even walking to the mail box is tough some days – fatigue sets in and takes a toll on her body. She has got to the point where New Zealand has nothing left to offer her.
“I get frustrated because I have heaps of things to do and I want to do them, but I get too tired.”
After looking into all the options available, she has chosen to undergo Hematopoietic Stem Cell Transplantation in Singapore at Raffles Hospital.
HSCT sees hematopoietic stem cells, found in bone marrow and cellular components of blood, transplanted into the body to boost the immune system.
“This isn’t a cure to my MS,” she says, “but it will slow down the process, to ensure a new lease of life with more energy, no relapses and a better quality of life for my family.”
The results of this treatment have positive results, but it does come at a massive cost.
The treatment itself is costs between $110,000-$120,000, and accommodation and living for two or more months is around $25,000.
In total she aims to raise $160,000, and all money donated over the total needed will be donated to Kicking MS charitable trust.
“I could end up in a wheelchair in 10 years’ time, but if I was to have this treatment, I could have a lot longer than that,” she says.
“My wish is that I will be able to receive this treatment before any more irreversible damage is done to my body.”
To contribute to Nicola’s mission of a relapse-free life, go to: www.givealittle.co.nz and search Nicola’s Mission to Attack MS with HSCT.