This treatment can't be given in the U.S. Apparently, it's safer in New Zealand. The regulations that the FDA imposes make little or no sense to those of us suffering from terminal and chronic diseases.

REXINE HAWES

https://www.stuff.co.nz/national/103...-msa-cerebella

April 16 2018

Bill and Jackie Anderson. Jackie has a rare incurable degenerative disease MSA/C, but is involved in a clinical trial developed in the US that is giving her hope for a future.

A Waikato woman, participating in a clinical trial out of the US, now has hope for a future.

Almost four years ago Jackie Anderson, from Matamata, was diagnosed with MSA/C (multiple system atrophy cerebella), a neurodegenerative disease, affecting the cerebella, the part of the brain that controls the body's every muscle.

Jackie's cerebella was shrinking and she had been steadily losing control of her muscles.

This affected speech, digestive system, organ function and limb control and overall co-ordination.

It was a disease, that without treatment, would kill her.

But there was no cure.

Jackie and her husband Bill were told to go home and prepare for the inevitable.

But a clinical trial developed in the US and administered in New Zealand, is providing hope.

In his quest for answers, Bill discovered A PhD researcher, who was working in a FDA approved research lab in the US.

He was was conducting research using stem cells help people with TBI (traumatic brain injuries).

They have been able to regenerate damaged brain cells.

Blood tests proved Jackie was a suitable candidate and she agreed to be part of the experiment.

She was eager, since there are no uncomfortable side affect caused by the treatments.

"She realises it's the only hope she has," said Bill.

"The hardest thing was we couldn't do it earlier but there was no hope earlier."

The treatment could not be administered in the US, but the New Zealand Ministry of Health gave it the go ahead.

The cryogenically frozen stem cells were transported from the US in a temperature controlled GPS tracked box.

Jackie received two vials per treatment, each vial had 100 million stem cells.

These were administered through an IV bag, under the watchful eye of their GP.

She needed three treatments in total.

The results exceeded expectations.

After two of the three required stem cell treatments, Bill said Jackie was able to hold a cup in her left hand, with minimal assistance from the right.

Limbs were moving on command, which was not possible before.

Speech was smoother and swallowing was easier.

"All of this is normal to us, but shows great progress for people with MSA/C," said Bill.

"This is encouraging for us.

"All along I thought we were on the right track, but there was always that 'maybe'."

Following the final treatment in late April, Jackie's blood results would be monitored before, during and six to eight months after.

The hope was the stem cells would survive and thrive and Jackie's cerebella would regenerate.

While Bill could not put a price on his wife's future, it had been a costly exercise.

Bill was prepared to re-mortgage the house but started a Givealittle page in December 2017 to help raise the necessary funds.

People responded, helping raise over $18,000.

But it was only enough to fund them a third of the way through the trial - they needed to raise the same amount again.

"We were told a few years ago to go home and prepare for the end," said Bill.

"But there is a lot of hope there now. It's really positive. I am chuffed."

He said being part of a experimental treatment was changing the outcome for others with degenerative diseases like MSA/C.

"They won't be told there is no hope," he said.

If you would like to help Jackie, visit their givealittle page.