Fighting to fundraise for severely disabled boy

  • 02/08/2015
(3 News)
(3 News)

By Kim Vinnell

It's a race against time for one Kiwi family trying to get their severely disabled son an experimental treatment, which they hope will give him a shot at a normal life.

Phoenix Suttie has severe cerebral palsy, and his parents are hoping to use umbilical cord blood stem cells to treat him.

But away from the spotlight, in between bouts, a fight of a different kind is underway.

Phoenix is almost three years old but he can't walk or talk, and his kickboxing gym-owner parents are looking for help fundraising.

They're fundraising for a second stem cell transplant – a therapy that it is hoped can help rejuvenate brain cells.

Phoenix's first bout of the treatment in the United States brought small but monumental improvements.

That round of treatment, where Phoenix was injected with his own stem cells saved from his umbilical cord, brought small but monumental improvements.

This time will be a little more experimental as Phoenix will have another baby's cord blood stem cells sent from China and have them injected in Bangkok.

While the therapy is controversial and some say it is unproven, Arna Johnson, Phoenix's mother, says she is under no illusions.

"He can't swallow safely; he can't sit up by himself; he can't speak one word.

"We're at square one, so the only way is up," she says.

The target is to raise $35,000 for the month-long treatment in September.

They hope Phoenix's fighting spirit will do the rest.

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