Double blow as rare disease strikes twins | Wairarapa News | Local News in Wairarapa

A Masterton woman suffering from a rare incurable disease is hoping for a drug funding u-turn after learning her twin brother has the same condition.

Allyson Lock, 46, is now in Florida, United States, where she is receiving free treatment for Pompe disease, a rare disorder with symptoms similar to muscular dystrophy.

Speaking from Florida, Mrs Lock said her twin brother Bruce Wells, who lives in Napier, had just been diagnosed with the disease.

"It's a genetic disease, so I guess it wasn't unexpected."

After being diagnosed in 2010, Mrs Lock was denied the $250,000 a year life-saving medication schedule by government funding organisation Pharmac.

Now Pharmac's board has agreed to hear three new applications for funding of the drug Myozyme at a meeting on September 27, with supporters hopeful the funding would be granted.

Mrs Lock said that while her treatment was being covered by the University of Florida, any future Pharmac funding would help to save the four other Pompe sufferers in New Zealand, including her brother.

"I hope it will set a precedent, that they will do the right thing by funding this medication.

"It would be great if we didn't all have to go overseas and go through all this just to get the treatment we need."

When news broke that Mrs Lock had Pompe, several fundraising ventures were organised in Wairarapa, including raising $3700 for her air fares to Florida.

This weekend a fundraising dinner and dance will be held at the Masterton Club in her aid.

John Forman, head of the New Zealand Organisation of Rare Disorders, said there was good evidence to show the medication would halt any decline caused by the disease - "and then probably produce a modest improvement".

"If you think that a sufferer is facing a decline until death, then a modest improvement followed by stabilisation is bloody fantastic," Mr Forman said.

He said that, without treatment, Pompe disease was fatal, leading over several years to increased muscle weakness and respiratory failure.

Mrs Lock said it was not as if the medication was "witchdoctor stuff".

"What really annoys me is that the Government says it's at the top of everything ... but when it comes to these really innovative medicines they don't want to know about it."

She said so far she had received two infusions and would receive 11 more before returning home in February.

"If I can keep from being locked into a hospital, and just be able to be a normal mother, then that would be fantastic."

Mrs Lock's husband Steve said he and the couple's children were looking forward to heading over to Florida after Christmas to spend time with her.

Pharmac was contacted yesterday but did not respond by deadline.

Mrs Lock's blog on her progress appears in Midweek.