Rare disorder leaves tot fighting for his life

Laura Mills

Paroa parents Cassie Brown and Josh Sutherland have been told it is a miracle their 10-month old son Luka, who has a rare disorder, is alive.
Luka was diagnosed with severe combined immunodeficiency disorder (SCID) on May 23, and the family has been at Starship Hospital in Auckland ever since. Luka is currently in critical care.
He was born in July last year weighing a healthy 8 pounds 2 ounces, but it soon became clear things were not right. After countless trips to the doctor and hospital, his parents were told he had colic, then reflux, then thrush, and a virus. Some days he was hysterical day and night.
At four months they thought Luka had an allergy to cow’s milk protein, and soon after that he got sick with his first virus. He first got pneumonia in January, it cleared up, came back and after months of sickness he was transferred to Christchurch on May 22. A day later he was diagnosed with SCID.
Luka now needs chemotherapy and a bone marrow transplant, but first he has to fight off a bad bug in his lungs called pneumocystis pneumonia, and some less serious bugs. He had been on a ventilator for weeks — coming off only yesterday — and doctors have told his parents it was as though he was trying to breathe “through concrete”.
In simple terms, Luka has no t-cells, which means his immune system does not work.
“They told us it’s a miracle he’s made it to 10 months,” Miss Brown said.
She wants to tell her story to raise awareness of SCID, which is rare. She has also been blogging on-line about their own journey with Luka.
Miss Brown said she also wanted mums to “trust their gut — mums know their babies best”.
The family is now living at Ronald McDonald House, in Auckland, and dad Josh has given up work in a goldmine to be with his baby.
A potential bone marrow donor has been found and if all goes well, they could get out of hospital early next year. Even then, it will take several years for the tot’s immune system to build back up.
Friends and family have launched a fundraising drive to help support them.
The family also want people to know the disease can be detected from the simple heel prick test done on newborns, something that happens in America, and others are petitioning to have this made compulsory here.
Experts believe that many children with SCID die from infections before being diagnosed.
You can read Miss Brown’s blog at http://cassiebrown06.blog.com/ and donate to the family at http://www.givealittle.co.nz/cause/LukasJourney. Information on the illness and support is available at http://idfnz.org.nz/