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Awhi Paul receives relief from genetic blood disorder

Awhi Paul receives relief from genetic blood disorder

A New Zealand girl with a rare genetic blood disorder has tried out her brand new spa for the first time, thanks to teamwork from two people whose hearts she touched.

Scott Brumby, from local spa manufacturer Formeleisure, donated a spa pool after learning about the Givealittle campaign started by cameraman Murray Job.

Their combined efforts resulted in a gift her family never imagined.

Awhi Paul, 12, was the first worldwide to be diagnosed with the Apo-CII disorder. Sufferers lack a critical enzyme that breaks down fat, making their blood white or pink, with streaks of red.

Her sister Kahia was also born with the disorder, but as a treatment was discovered after Awhi's diagnosis, Kahia does not suffer the same debilitating symptoms. For Awhi, however, the disorder meant that her brain did not get the nutrients it needed, so her development is indefinitely delayed. Awhi is also blind, and cannot move her limbs independently.

The only thing that helps, says her family, is a bath. The warmth of the water allows her rigid muscles and joints to relax.

“Bath time is her favourite thing,” says Jane Paul, Awhi's mother.

“But she is completely dependent, so one of us has to be in there holding her. And she was getting way too big for that. We really wanted a spa, but there was just no way we were ever going to be able to save enough money.”

Cameraman Murray Job, who filmed Awhi for a Maori TV documentary about her condition, immediately wanted to help.

“I just thought, you know, how can we get this girl her spa? I knew about the Givealittle website, so I thought if a lot of people just give a little, we might be able to raise enough. Let's give that a go,” he says. The donations poured in, reaching more than $3800 within a few weeks.

Maori TV contacted Scott Brumby at Formeleisure Spas, to see if the amount raised at that stage would be enough to buy a spa. But after watching the documentary, Scott was so touched by Awhi's plight that he decided to go a step further, giving the family their own brand-new 13-jet FormeSpa for free, so they could use the Givealittle money for medical costs.

Formeleisure Spas is a family owned and operated New Zealand rotamoulding company that, as Scott says, “hand-builds dreams.”

The spa they donated is certainly a dream come true for Awhi. It is chlorine-free and ozone-purified, to avoid damaging her thin skin, and hydrotherapy will increase Awhi's blood flow and circulation, easing her chronic pain. The spa plugged straight into a standard household power outlet so there was no expensive wiring or electrician's bill for the family.

Several of the Paul family's children hopped in as Awhi took her first dip in the spa.

Scott, Murray and a Maori TV camera crew looked on, and there was no doubt about the therapeutic benefits.

“When Jane lowered Awhi into the water, as soon as she was under she was in absolute bliss,” says Scott. “That was possibly one of the greatest moments in my life. And to see her fingers, wrists and legs uncurl, relax and stretch out within a few minutes was just incredible. It was amazing to be in a position to donate the spa to such an incredibly beautiful and close-knit family. To be a part of Awhi`s life was very humbling.”

The relief for Awhi and her family is huge.

“This spa is what we would have asked for out of anything in the world,” says Awhi's mother, Jane.

“We really have won Lotto.”

“I just want to say the biggest thank you to Scott and Formeleisure and Murray and everyone who donated.”


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