From the time she was a few days old, beautiful blonde tot Coco-Maria Martinengo engaged with everyone around her, giving smiles and little chuckles. For her parents, Kim Martinengo and Jo Galvin, Coco’s sunny nature was both a source of delight – and a concern.
“The day she was born, I thought instinctively there was something wrong with her,” says her mum Jo, 33, a photographer and ceramic artist. Coco was small, struggled to feed, barely slept and wasn’t meeting her milestones.
More mysteriously, though, the wee girl had a constant smile and a strange fascination with water – making a beeline for anyone holding a glass of water, obsessing over the water play at preschool and refusing to get out of the bath.
“I was concerned, but I knew I’d look crazy if I went to the doctor and said, ‘My baby is too happy and loves water too much,’” recalls Jo.
Her partner Kim, a project manager who contracts to the Auckland City Council for public art works, recalls, “Jo was worried for a long time, but I thought, ‘All babies are different.’”
The 48-year-old – who also has two older children, Poppy, 20, and Hemi, six – says, “It wasn’t until Coco was about one that I agreed something was wrong.”
Jo and Kim talked to their doctor, and Coco was referred to a paediatrician. “I think he took one look at her and just knew,” tells Jo.
Two days before Christmas last year, the Auckland couple were told their precious wee girl had a rare and complex neuro-genetic disorder known as Angelman syndrome, previously labelled Happy Puppet syndrome.
Although not widely understood, it came to the fore a few years ago when In Bruges actor Colin Farrell went public about his son James, who has the same condition.
In addition to delayed development, children affected by the disorder are mostly blonde and fair-skinned, have a happy, excitable nature, and have a fixation with water.
“Of course they tell you not to Google anything when your child is diagnosed, but I went home and went into full-on research mode,” admits Jo. “I disappeared down a rabbit hole.”
Although every child is different, many grow into non-verbal adults, suffer from seizures and have a range of intellectual disabilities. The desire to seek out water is a constant danger.
“It’s likely when she’s older, Coco could wake in the night and think, ‘I want to go to the beach,’ then walk out the door without any concern because she doesn’t have a sense of danger,” explains Jo.
After Coco’s diagnosis, Jo entered a period of grief from which she has only recently emerged.
“When you have a baby, you assume its body will work, it will be able to talk to you and it will wear the dress you buy it for the prom,” she confesses.
While the future looks different from what she and Kim once imagined, they know the new version of tomorrow still promises joy for their little family.
“We have realised one of the beautiful things is that we get to enjoy Coco as a baby for longer – that stage doesn’t just disappear before your eyes,” smiles Jo.
Despite that, caring for Coco has been an exhaustive labour of love. The gorgeous girl barely sleeps, is full of energy and needs round-the-clock supervision.
She has a constant and expensive schedule of music therapy, physiotherapy, occupational therapy and speech-language therapy, but finally now Kim and Jo are beginning to see results.
“I was at the supermarket the other day and she grabbed a kiwifruit and began to eat it,” says Jo. “That was huge.”
Although she turns two in October, Coco still isn’t walking. Because Angelman kids suffer ataxia, or a lack of voluntary coordination of muscles, many of her movements are jerky and she finds it hard to balance.
Nevertheless, at home in her parents’ villa, she crawls around happily and pulls herself up on furniture with ease, giggling and smiling. “Coco is a kind and loving girl, and her happiness is contagious,” says Jo.
As well as Coco’s various therapies, Kim and Jo say her new anti-inflammatory diet – no wheat, dairy or sugar, and organic meat at lunchtime – has made a huge difference to her development.
As a child, Kim suffered from rheumatoid arthritis and was put on the diet by a naturopath.
“We don’t reject medical science – we are not flat-earthers,” laughs Kim. “We are using the diet in a complementary way and it’s working.”
Although many Angelman children never walk or talk, Kim and Jo know they are giving Coco a fighting chance with an early diagnosis and as much intervention as possible.
While Jo has fears about who will care for Coco in the future, she and Kim are determined to enjoy their joyful daughter every day and celebrate her small successes.
“Having a child with a disability is a challenge, but it’s also a gift, a learning experience,” says Kim.
“We used to be crazy mad collectors, but we’ve given most of it away. We have reassessed what makes us happy and it’s our little family unit.”
Says Jo, “Life isn’t easy – it’s just a different kind of difficult. I feel lucky we will have a happy and loving girl around us for the rest of our lives.”
