In the Suttie family, they call it “chasing smiles” – drawing out a grin from a special little boy named Phoenix can light up the whole room.
“Everyone who meets Phoenix is addicted to making him smile,” says his mother Arna Suttie, 35. “You can have the worst day, but a grin from Phoenix makes everything OK.”
The three-year-old with the startling aqua eyes was diagnosed at birth with cerebral palsy as a result of brain damage. Refusing to accept their precious son would never walk or talk, Arna and her husband Jason have dedicated their lives to see him reach his full potential.
Jason, 42, a retired Muay Thai martial arts fighter with six world titles under his belt, describes the battle for his oldest son as the biggest bout of his life. “Arna and I mourned for the life our son would never have. Then I said to Arna, ‘Let’s do what we do best – fight,’” says Jason.
And what began as a life-long quest for Arna and Jason has now become a family affair, with the arrival of little brother Manaia, two, and sister, Keni, who was born on December 8 last year. The couple also have a 12-year-old daughter, Yuki.
“I love all my children equally, but Phoenix will always be my special little boy. And not just for me – but for all of us,” tells Arna.
For the Sutties, that means everyone pitches in to help with Phoenix’s gruelling schedule of physiotherapy, acupuncture and chiropractor appointments, as well as physical and intellectual stimulation. In addition to the daily grind, Arna and Jason have fundraised more than $50,000 to take Phoenix overseas for two stem cell infusions.
Because it’s thought stem cells have the ability to renew themselves, there’s hope that injecting them with either blood from the umbilical cord – the couple had stored their boy’s at birth – or a donor can help repair damaged nerves and muscles.
Two years ago, while she was seven months pregnant with Manaia, Arna took Phoenix to the Duke University School of Medicine in North Carolina, and in September, the entire family travelled to Thailand so Phoenix could have another infusion.
Says Arna, “At times it was hard. Manaia found the heat, the food and the traffic challenging, and I was pregnant – again!”
Phoenix has made progress since his last treatment and Arna says it’s in part because he gets so much support from the entire whanau.“That’s how we roll – we are Team Suttie.”
Arna may never know why Phoenix was born the way he was. “I was so cautious during my pregnancy,” she recalls.
“I wouldn’t even eat cheese or unwashed salad and all of this still happened.”
Understandably, the dedicated mum felt anxious during her subsequent pregnancies with Manaia and Keni. “It was scary doing it all over again. But when I held my healthy babies in my arms, it was all worth it.”
Siblings’ love
Equally rewarding was seeing Phoenix meet his new baby brother and sister. “When I was expecting Manaia, we talked to Phoenix about the baby in Mummy’s tummy, but we were unsure how much he understood,” says Arna. “When he met Manaia, his face lit up – he was over the moon. But when Keni arrived, he was more like, ‘Really? Another one?’”
Arna and Jason say that seeing the love between Phoenix and his siblings makes all the hard work worthwhile. Explains Arna, “He struggles to control his arms – they flick around a lot. But when I put Keni in his arms, he lies still and looks at her in awe.”
Arna and Jason are adamant that the plucky tot has made real progress since his last trip overseas. “They may seem small changes to others, but for us, they are huge,” says Arna.
For instance, not long after his second infusion, Phoenix laughed loudly at a cartoon on television. For his parents, it was a joyous moment. “I was fired up all day,” Arna smiles.
Phoenix is now reaching and grabbing at objects in front of him, and trying to propel himself along on his tummy. He is more vocal and, more importantly, he seems happier. Both Jason and Arna are continuing to fundraise for their boy with the hope of taking him overseas again at the end of the year for more stem cell treatments.
“We see hope and because of that, we will always keep fighting for Phoenix,” insists Arna.
