Hawke's Bay RRMS battler fundraising for life-saving treatment in Mexico

Margot Koko, with her son, Thomas Koko, Tom Koko (husband) and other son, William Koko. Photo/Supplied.

Up until February 2017, Hawke's Bay woman Margot Koko was living a relatively normal life.

That is, until her 20-year battle with multiple sclerosis took a severe turn for the worse.

"Things were exacerbated. I went from playing sport, fulltime work, being a mother and a wife and then all of a sudden I started having seizures and things absolutely changed for me."

The 42-year-old had to give up working last year as a floral designer and caterer due to the progression of the disease.

"It rapidly started to, and continues to affect the strength in my hands, the pace and frequency of my mobility, my fatigue and my cognitive impairment," Koko said.

It was these symptoms that led to her diagnosis to be reassessed to Remitting Relapsing Multiple Sclerosis (RRMS).

She and her husband, Tom Koko, have five children between them ranging in age from 16 to 36. "I have older children and they have had to really step up for me. They've done things you don't ever think you will have to ask your children to do."

Now she has her heart set on undergoing Hematopioetic Stem Cell Transplantation (HSCT) from Clinica Ruiz in Mexico. However, it comes with an "awful price tag" - US$54,500 ($76,000) which only includes the 28-day treatment and does not include return flights from New Zealand to Mexico for Koko and her husband who will be caring for her.

And despite concerted efforts from family, friends and even strangers who have heard about her plight, she is still a long way off the target.

The treatment works by taking and storing stem cells from the blood, before the body is then blasted with chemotherapy to kill off the immune system. The MS memory-free stem cells are then re-infused and the process of building a new immune system, without the memory of MS begins.

"The understanding is that wiping out and rebooting the immune system will halt the progression of the disease and stop any further relapses or attacks."

She understands the treatment is effective for 70-90 per cent of patients with MS and the best odds are those with RRMS in its early stages.

Upon arriving back to New Zealand, she requires three months of post-treatment involving 24/7 home care and it takes two years to fully gain the benefit of HSCT.

On Saturday night, her friends from the Celtic Netball Club raised more than $18,000 from auctions and raffles. Friends, Caren Karika and Deanne Louis organised the event. Karika has known Koko for well over 20 years and said it was easy to do for the family.

"They are an incredible family who will do anything for you. This was easy to do for them.
Suffering from MS is like a death sentence when you are as creative as Margot - you can't do what you love anymore."

"The love and everything we have received is overwhelming," Koko said - the enormity of the situation weighing heavily on her shoulders. "I don't feel thank you is enough."

A Givealittle page set up for Koko has reached more than $13,000. However, she is still more than $40,000 away from her target, with all expenses included.

To donate, visit: https://givealittle.co.nz/cause/help-margot-fight-multiple-sclerosis