A degenerative condition is slowly robbing little Iziyah Moemai of his sight, so his dedicated parents, Danielle Noyer and Sia Moemai, are determined to give their boy as many visual memories as they can.
But in a cruel twist, the four-year-old spends much of his time housebound because another condition has left him with almost no immune system.
“Crowds have germs and if Iziyah catches a cold, it could kill him,” says Danielle, who teaches Iziyah and his two-year-old sister Kaylee kindergarten lessons by correspondence.
Because of his poor immune system, Auckland boy Iziyah has never been to the zoo, to an amusement park or on a train. He can’t go to preschool or have playdates with his friends.
“The reality is that almost all of our life is spent at home,” says Danielle, 23. “That’s what we have to do to keep Iziyah safe and keep him alive.”
Doting parents Sia Moemai and Danielle Noyer are determined to give their boy as many visual memories as they can.
On the brink
Two years ago, young Iziyah was diagnosed with chronic granulomatous disorder, a blood condition that only affects a handful of children in New Zealand. Because some of his white blood cells don’t work properly, he struggles to fight off bacterial and fungal infections.
“Since Iziyah was two months old, he has had coughs and fevers,” explains Danielle. “We would be at the doctor’s once or twice a fortnight. He was always sick.”
Just before his diagnosis, doctors found an abscess on Iziyah’s lung and removed a third of the infected organ.
It soon became apparent that a bone marrow transplant was his best option, but because of his mixed Samoan and Pakeha blood, finding a match in his family was difficult.
Luckily, through the world database, a donor was eventually found in Germany.
But the transplant left Iziyah with chronic graft versus host, a condition that develops in about 10 percent of people following the surgery. It’s where the white blood cells in the donated marrow attack the recipient’s cells because they detect them as foreign. “The skin on his hands and face had literally turned purple.”
In September last year, Iziyah’s life hung in the balance and surgeons told his family to prepare for the worst.
“At one stage, he had a blockage in his gut. They needed to operate and they told us he might not make it,” recalls Danielle. The pain afterwards was so severe, Iziyah was on the methadone programme for eight months and has only just been weaned off.
Chronic graft versus host affects not only Iziyah’s gut, but also his lungs and the pigmentation in his skin. His hair is thinning and his toenails and fingernails have not grown for the past year. When he was younger, doctors also diagnosed Iziyah with retinal dystrophy, which has left him blind in his right eye and with tunnel vision in his left eye.
“No-one knows how long it will be before he loses his sight. It may be one year, it may be two, it may be 10,” says Danielle. “He is beginning to learn Braille, but in the meantime, we just take one day at a time and try to create as many memories as we can.”
However, because of his low immunity, most of Iziyah’s memories are made within the confines of his family’s rented bungalow in Westmere.
While dad Sia, 24, works long hours in the glass industry, dedicated at-home mum Danielle has turned the lounge into a play zone and makeshift kindy. “People ask how I don’t go mad hanging out all day at home with the kids, and yes, it can be hard,” laughs Danielle. “But Mum pops over and so does my sister. We allow visitors as long as they are not sick and use the hand sanitiser at the door.”
Two years ago, Iziyah was diagnosed with a rare blood condition
Special treat
In June, Hoyts at Sylvia Park responded to a post on Iziyah’s Facebook page titled “Iziyah’s Intrepid Journey”, and closed the cinema so the preschooler could see his first movie, a private screening of Minions.
“He wore a mask into the movie theatre and our family sat in the front so he could see,” says Danielle. “It was such an amazing experience for him – he was over the moon.”
Danielle tries her best to get Iziyah and Kaylee out of the house at least a few times a week – Iziyah goes to Homai Campus School one day and also has a weekly check-up at Starship children’s hospital.
She takes the kids to the supermarket too, but they go before 8am. Her son wears a surgical mask and Danielle cleans surfaces with medical wipes. Yet despite everything, Iziyah is a bubbly and social boy.
“He’s amazing,” says Danielle proudly. “He’s always happy and full of beans. He just gets on with life as best he can.”
Now he’s four, she tells, he is aware of people staring at his skin or mask while he is at the supermarket. “I just say to him, ‘Give them a wave.’ He’s very brave and doesn’t seem to mind the funny looks.”
Because of the unpredictable nature of chronic graft versus host and Iziyah’s compromised immune system, Danielle says no-one knows what the future holds. But Danielle and Sia are just thrilled to have their wee boy back from the brink of death – and smiling.
“After what we have been through, we are just so very grateful we have Iziyah,” she reflects. “No matter what lies ahead, we are determined to enjoy every day.”
