Eden Dargaville (left) and husband Chase want to focus on the positives of life with daughter Willow. Photo / Chase Dargaville
Eden Dargaville (left) and husband Chase want to focus on the positives of life with daughter Willow. Photo / Chase Dargaville
The parents of a 5-year-old with a condition that limits her life expectancy are making their daughter’s days count rather than counting the days.
Chase and Eden Dargaville moved to Hastings from Tauranga with Willow, their only child, nearly three years ago.
Willow was born with mucolipidosis type 2,a rare genetic condition that affects her muscles, heart, lungs, development and every part of her daily life.
She attends Kōwhai Specialist School for a couple of hours four days a week.
“Outside of that, it is just constant maintenance of her health: physical therapy, occupational therapy, speech therapy, cardiologist – you name it, we have one.”
Chase said that because there were so few cases of mucolipidosis type 2 worldwide, it was hard to know how long Willow would survive.
“It’s rare to come by babies with the condition, let alone to see the outcome and do medical research,” he said.
“We’re not going to focus on the life expectancy part. We are just going to give her the absolute best life, full of everything that we can offer until we can’t any more.”
But Eden said being a carer for a disabled child can be financially limiting.
However, a Givealittle page set up by the family entitled “Making the Days Count for Willow” would help them give Willow the best life possible.
The funds raised would go towards giving her experiences she otherwise wouldn’t be able to have, like getting to try new foods, people-watching, and visiting whānau and zoos around the country – all things she loves.
Chase said these things help Willow get so much joy out of life.
