By Hayley Gastmeier
A Carterton man is on a mission to raise money for overseas medical treatment so he can beat his multiple sclerosis and get back to being a regular dad to his kids.
Nick Perkins, a 33-year-old IT technician, was diagnosed with the degenerative disease two years ago after partially loosing vision in his left eye.
Since then he and wife Danielle have decided stem cell treatment would give him the best fighting chance.
“The idea of my boys growing up having to constantly explain why dad’s in a wheelchair, or why dad can’t play rugby or why dad can’t do this or that, that pretty much was the decider for me,” he said.
“I want to be able to run around with the kids and play and do all the fun things that they want to do.”
Father to four-year-old Thomas and two-year-old Lachlan, Nick was accepted to receive hematopoietic stem cell transplantation which halts the progression of the disease.
“It’s referred to as stem cell treatment which is a little bit misleading, it’s basically chemotherapy.
“The stem cells are really just there to reboot the immune system after the chemotherapy.
“MS is an auto immune disease – so it’s the immune system causing issues – and the treatment uses chemo to kill the immune system completely.
“And then hopefully it will be rebuilt without the defect that’s causing the problem.”
The treatment is not available in New Zealand so Nick will have to travel to Singapore, a trip he plans to make in April next year.
His aim is to raise $200,000 to cover the estimated $120,000 three-month treatment, flights for himself and carers, accommodation, and lost earnings.
When he returns after the treatment he is expecting to be off work for at least three months while recovering.
So far $54,603 has been raised with help from his Givealittle page, ‘inthenickoftime’.
Nick said the impact MS was having on his body was hard to describe.
“I have a couple of physical symptoms but they aren’t really my biggest problem, my biggest problem is cognitive symptoms – so like brain fog, fatigue and things like that,” he said.
“Physically, I’ve got bad vision in my left eye… and then my right knee is very weak so it gives out and gives me a lot of pain.”
Nick said the symptoms would get worse over time but it was impossible to know how quickly things would go downhill.
“It could stay at this level for 50 years… or I could wake up tomorrow and that leg just doesn’t work at all.”
He said the treatment would only “halt MS in its tracks” but those he had spoken to who had received it were “seeing some incredible results”.
Up until being diagnosed with MS, Nick could not remember his last doctor’s visit.
The disease had taken over his life, he said.
“And it’s really hard to explain to people because from the outside talking to me you’d never know.”
The only giveaway so far was a slight “hobble” due to his sore knee.
“The only time I can genuinely say I haven’t thought about MS since being diagnosed was when I threw myself out of a plane… but no, you never stop thinking about it, you never stop, it’s always there.”
no, you never stop thinking about it, you never stop, it’s always there.”
By Hayley Gastmeier