Teen heads to Italy for stem cell treatment
Family pulling out all the stops to fight immunodeficiency disease
A Tauranga family are re-mortgaging their house, selling a car and borrowing money to move to Italy so their teen son can receive treatment for a rare disease.
Sixteen-year-old Daniel Patterson was born with Wiskott-AldrichSyndrome (WAS) — a rare genetic immunodeficiency that prevents his immune system from functioning properly.
This means it’s difficult for Daniel’s bone marrow to produce platelets, 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,” said Daniel’s dad, Neil Patterson.
The risk of a transplant was also too high at the time. So Daniel grew up without having the surgery.
But 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 last year, Daniel started having intense leg pains.
“He couldn’t stand. He couldn’t even sit in the car . . . his legs would go bright red.”
After several visits to a number of different doctors, Daniel and his parents still didn’t have a diagnosis.
So Patterson and his wife Apple took Daniel to Thailand, where his
leg problem was diagnosed as lupus vasculitis.
Patterson 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.
Speaking with the Italian doctors via video call this week, the family were told Daniel could either have a stem cell transplant using bone marrow from Patterson, a suitable donor or by gene therapy using his own bone marrow.
The latter option is still being trialled.
The cost of the transplant will be
more than €300,000, plus outpatient medication — about $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,” Neil Patterson said.
Daniel will spend four to six
weeks in hospital, then have twiceweekly check-ups for at least six months.
i
A Givealittle page has been set up. To donate, go to givealittle. co.nz and search Daniel Patterson.