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A Tauranga family is moving to Italy so their son can receive treatment for a rare disease.
Sixteen-year-old Daniel Patterson was born with Wiskott-Aldrich-Syndrome (WAS) – a rare genetic immunodeficiency that prevents his immune system from functioning properly.
This means it’s difficult for Daniel’s bone marrow to produceplatelets, making him susceptible to internal bleeding.
“[Doctors] were going to do a bone marrow transplant when he was a baby, but there wasn’t a suitable match,” says Daniel’s dad, Neil Patterson. Neil says the risk of transplant at that stage was also too high.
Daniel Patterson and his mum Apple Patterson in hospital in Tauranga.
Over the past few years, Daniel’s condition has developed into an autoimmune disease. In December 2022, Daniel started having severe stomach problems.
“We took him into the hospital and after blood transfusions, platelet transfusions, colonoscopy and endoscopies – they found out he has inflammatory bowel disease.”
This was found to be ulcerative colitis. Then, in April 2023, Daniel started having intense leg pains.
“He couldn’t stand. He couldn’t even sit in the car … his legs would go bright red.
Sixteen-year-old Daniel Patterson was born with Wiskott-Aldrich-Syndrome.
After several visits to a number of different doctors, Daniel and his parents were still no closer to a diagnosis.
With his wife, Apple, Neil then took his son to Thailand, where the problem with Daniel’s leg was diagnosed as lupus vasculitis.
Neil says Daniel now requires a stem cell transplant before the lupus vasculitis attacks his organs and causes irreparable damage.
The couple say they are opting for Daniel to have a bone marrow transplant in Italy, where they will need to be based for six months to a year.
Daniel with his dad, Neil.
Speaking with the Italian doctors via video call on Tuesday, Daniel will either have a stem cell transplant using bone marrow from Neil, a suitable donor or by gene therapy using his own bone marrow – the latter still being under trial.
The cost of the transplant will be more than €300,000, plus outpatient medication – about NZ$541,000.
“We’ve re-mortgaged the house. We’ll sell one of the cars, and Apple’s borrowed money from the family, then we’ll use some of our savings but that’s just some of the costs.”
Daniel will need to then spend four to six weeks in hospital after the procedure, and then six months or more as an outpatient with weekly check-ups twice a week.
