Irene Veenendaal fights to get life back

It was little comfort to have an explanation for the previous decade of vague symptoms, the aching ankles, the pins and needles in her hands, the clumsiness and fatigue.

The condition is progressive and has no cure.

"I had to take a day off work to recover from the news."

That was 11 years ago.

The panic attacks and the depression followed as she grappled with the only certainty – that it was going to get worse.

While some people have exacerbations – debilitating episodes after which there is some recovery – her condition settled in to a steady downhill slide. The deterioration soon took her past the point where she was eligible for drugs such as beta interferon.

Six years ago she gave up the job she loved at a Levin supermarket, no longer able to manage the standing and walking. Two years ago she stopped walking altogether, and now depends on 17 1/2 hours a week of home help and assistance with her personal cares.

But the 46-year-old hasn't given up.

Mrs Veenendaal's been accepted on to a stem cell therapy programme at the Xcell Centre in Cologne in Germany. The estimated cost of treatment, travel and accommodation for herself and husband Andy, is about $40,000.

It's a lot of money for a little hope.

Results so far from a follow-up of 19 patients shows 11 experienced some-to-significant improvement. Seven showed no change, and one got worse.

"I have to take the chance. You will do anything when you are desperate and want your life back.

"I know it's not going to heal the damage in my spine. But if I could just get back on my walker, I would be happy. I need to get better for my girls [adult daughters Julia and Renee], and Andy, and my grandson (Vincent)."

The therapy involves extracting a collection of her own stem cells from the bone marrow in her hip. The cells are separated out, cleansed, and reinjected either into her blood or spinal fluid in the hope they will develop into the sort of tissues needed to help repair her nerve connections.

Centre doctor Issam Errahmaoui has suggested she get to Cologne as soon as she can.

The only reason for delay is the need to raise the money.

And for help with that, she's looking to her social group – the mobility scooter riders.

It's a challenge Bob Twist has been able to embrace while sitting down, making the calls and writing the letters to pull together a sponsored scooter marathon at the Levin Domain next Saturday.

The goal is to have at least one scooter on the 400 metre circuit from 9am until 4pm. Non-scooter owners can have a go for $2, and those who ride their own will donate $1 a loop or bring a sponsorship list.

Mr Twist says there'll be a sausage sizzle and raffles, and he's working on getting some celebrity visitors to drop in. AMI, McDonalds, and Mobility Scooters Manawatu are among the major supporters.

- © Fairfax NZ News