KEY POINTS:
Joe Conrad has difficulty pronouncing the disease which is gradually attacking his young daughter, let alone understand the prognosis.
He knows it's not good; that 12-year-old Reiha is in constant pain; and she is confined to a wheelchair.
But he does know that he and Matteo de Nora,
the reclusive millionaire who backed Team New Zealand and organised a wealthy syndicate of funders to ensure we would race in Valencia, were meant to meet.
In April, one of the world's leading paediatricians and rheumatologists, Francesco Zulian, will arrive from Italy to examine Reiha and consult her specialist, thanks to a chance meeting in Valencia. He will also see other New Zealand children with rare conditions.
It was Reiha's bright, hand-made banner that caught de Nora's eye during the tension and tactics of last year's America's Cup. Reiha, who spent hours making the banner, asked her father to take it to Valencia with the waka crew and wave it in view of a TV camera as part of a Maori Television competition.
The banner, lying on the boardroom table in Team New Zealand's base, had just been signed by Grant Dalton and other team members when de Nora spotted it and asked about its significance.
On hearing Reiha was confined to a wheelchair and in constant pain from a connective tissue disease, juvenile systemic sclerosis, he offered to do what he could to help.
The next day, at Joe Conrad's invitation, de Nora - wearing a full moko - took a place in the waka which accompanied NZL92 out on to the water for the start of the Louis Vuitton Cup.
Although from different worlds, Conrad and de Nora forged an immediate bond.
Back in Auckland after organising the waka crews for the Waitangi Day celebrations, Conrad remembers the day he met de Nora. "I knew he was someone important," he jokes. "I thought he was the King of Spain."
Earlier this month, the two men met again when de Nora drove to Waitangi to meet Reiha and her mother Debbie. What started as a chat over a cup of tea in the camp ground ended with a moving powhiri, haka and waiata by members of the Tai Tokerau tribes in de Nora's honour.
The people wanted to acknowledge what de Nora had done, Conrad said.
"I think he has a wairua, a spirit, a heart. It was not until we came home that we realised who he was and what he had done for our country. And now he has helped my daughter. It is coming from the heart, not from his pocket. He has made good his promise."
Six years ago, Reiha went from being a happy, chubby youngster to a child in constant pain. At first diagnosed as arthritis, the condition was not identified until Conrad bundled his thin and ailing child into the car and drove her to Starship. He thought she had leukaemia. A Wellington specialist confirmed a diagnosis of juvenile systemic sclerosis (also known as skerdermia). The disease can attack internal organs, skin and connective tissue in the body as it progresses. The body becomes swollen and painful.
Conrad is realistic about Reiha's condition. He knows that there is no known cure.
"Matteo just wants to make sure that if the leading experts in the world come up with any medical cure or any other way to make her life comfortable that we get treatment."
