Whakatāne parents Tamara Holland-Goodwin and Leon Woodward are fundraising to give their son Arlo, 15 months, access to life-changing therapy. Photo / Brianna Stewart
Arlo Woodward’s grin is so infectious that it’s almost impossible not to smile back when he puts his two front teeth on display.
The cheerful 15-month-old Whakatāne boy was diagnosed this year with bilateral perisylvian polymicrogyria, a rare condition that causes the brain to have too many small folds.
For Arlo, these are located on both sides of his head, above his ears. An MRI also found the front of his brain is smooth.
To parents Tamara Holland-Goodwin and Leon Woodward, Arlo is the most amazing child in the world.
They want the best for their baby, so they’re sharing his story to fundraise for expensive private treatment in Rotorua.
When asked to describe her son, “happy” is the first word to come to mind for Holland-Goodwin.
“He’s just one of a kind. He’s amazing. He’s literally the happiest boy you’ll ever meet. He’s just happy to be alive, happy to live, he’s smiling at everything. He’s got such a cute and fun personality.
“With everything we’ve been through with him, he’s never stopped smiling.”
Holland-Goodwin was studying to become a personal trainer when she discovered she was pregnant with Arlo. It was a welcome surprise.
Holland-Goodwin said her pregnancy was smooth.
Every scan showed Arlo was healthy and the birth was textbook.
Almost immediately, they ran into issues with breastfeeding.
They transitioned to formula and that worked – until it didn’t.
“He almost went into survival mode,” she said.
“He would only eat enough to survive. We went to A&E probably three or four times.”
In mid-January, their paediatrician noted Arlo was not meeting his milestones and was moving abnormally.
A couple of weeks later, Arlo became sick with an upper respiratory infection and fever, and stopped feeding entirely.
He was admitted to hospital for a few days, fitted with a nasogastric tube and diagnosed with an oral aversion.
It is still unknown what caused Arlo to miss his milestones. Holland-Goodwin said the focus was on making sure Arlo was getting sufficient nutrition.
Genetic tests analysed in New Zealand and Finland have shown nothing to indicate a cause for Arlo’s developmental delays.
An MRI when he was about 8 months old showed the polymicrogyria and abnormal sulcation (smoothness).
Holland-Goodwin said the affected parts of Arlo’s brain control sucking, swallowing and speech.
“As feeding got harder and his body wasn’t developing as it should, he became averse to the boob, the bottle and feeding in general.”
Arlo is now fed through a gastrostomy tube directly into his stomach.
He also has cerebral palsy, an umbrella term for a group of conditions affecting movement and posture.
It is not known what type of cerebral palsy he has, or what caused it.
To stimulate that part of his brain and work the muscles that will allow him to stand independently later, he spends an hour every morning in a standing frame.
The frame is funded by Child Disability Services, as is a hybrid wheelchair-highchair.
He also contends with an overly sensitive gag reflex and has had three seizures. Seizure medication has helped.
“It never gets easier. It’s scary every time,” Holland-Goodwin said.
Arlo has physiotherapy twice a week to stimulate parts of his brain that aren’t being engaged because he isn’t moving normally. He is just starting to roll and can’t sit independently or bear weight on his legs for long.
“He’s still a fair way away from being able to move the way that he wants to,” Holland-Goodwin said.
Intensive therapy programmes overseas have helped improve the lives of similar children and in July, Australian company Centre of Movement opened a Rotorua clinic offering the service.
It’s expensive, but offers Arlo’s parents hope for their boy. They understand a baby of a similar age is thriving in the programme.
They were quoted $10,000 for three weeks of therapy, with costs tapering down for shorter periods. Arlo would need multiple sessions.
At 15 months old, Arlo’s progress has slowed and his parents are keen to see momentum pick up again.
“When we heard the price, but that there was hope for improvement, we couldn’t just not try. Arlo is so happy and he deserves to have every chance,” Holland-Goodwin said.
“We have no idea if this will help, but we can’t not try.”
They hope it will help him reach his milestones and eventually have an independent future, even if they have to fund years of therapy.
“I don’t ever want him to look at another kid and be like, ‘Mum, why can’t I do that?’” Holland-Goodwin said.
“I want him to be able to do everything.”
Woodward said it was tough seeing his child not be able to do the things he wanted to.
“Why is it our kid that has to suffer? He’s perfect in his own way. We wouldn’t change him for the world.”
The couple set up a Givealittle fundraiser for Arlo’s therapy. So far, they have raised nearly $8000 and have had a donation from the Dream Chaser Foundation, which was set up by a local mother who lost her son to childhood cancer.
Holland-Goodwin wanted every donor to know how much their gift meant to the family.
“I’m just so grateful and I hope one day that we will be able to give back.”