\u201cOutside of that, it is just constant maintenance of her health: physical therapy, occupational therapy, speech therapy, cardiologist \u2013 you name it, we have one.\u201d<\/p>\n
Chase said that because there were so few cases of mucolipidosis type 2 worldwide, it was hard to know how long Willow would survive.<\/p>\n
\u201cIt\u2019s rare to come by babies with the condition, let alone to see the outcome and do medical research,\u201d he said.<\/p>\n
\u201cSo it\u2019s kind of like trial and error and see what time comes.\u201d<\/p>\n
The pair said that, based on a medical article from around 1998, Willow\u2019s life expectancy was \u201c10 and under\u201d.<\/p>\n
\u201cThankfully, with the perks of modern medicine, there are kids exceeding that,\u201d Eden said.<\/p>\n
\u201cBut even two kids with this exact same condition type, it completely varies child to child. So no doctor can definitively say what we\u2019re looking at.\u201d<\/p>\n
Willow Dargaville was born with a rare genetic condition. Photo \/ Chase Dargaville<\/p>\n
With the unknown hanging over the family\u2019s head, they decided to focus on the positives in life \u2013 not count the days but make the days count.<\/p>\n
\u201cWe\u2019re 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\u2019t any more.\u201d<\/p>\n
But Eden said being a carer for a disabled child can be financially limiting.<\/p>\n
However, a Givealittle page set up by the family entitled \u201cMaking the Days Count for Willow\u201d would help them give Willow the best life possible.<\/p>\n
The funds raised would go towards giving her experiences she otherwise wouldn\u2019t be able to have, like getting to try new foods, people-watching, and visiting wh\u0101nau and zoos around the country \u2013 all things she loves.<\/p>\n
Chase said these things help Willow get so much joy out of life.<\/p>\n
\u201cSo we\u2019re going to enjoy it with her.\u201d<\/p>\n
Jack Riddell is a multimedia journalist with Hawke\u2019s Bay Today and has worked in radio and media in Britain, Germany, and New Zealand.<\/p>\n","protected":false},"excerpt":{"rendered":"\u201cOutside of that, it is just constant maintenance of her health: physical therapy, occupational therapy, speech therapy, cardiologist…\n","protected":false},"author":2,"featured_media":429482,"comment_status":"","ping_status":"","sticky":false,"template":"","format":"standard","meta":{"footnotes":""},"categories":[5],"tags":[103976,220033,138,1738,1239,5906,23438,23155,13978,5972,4731,14768,185574,2082,5194,29418,424,53946,5812,1446,111,139,69,3766,37410,49929,131,1361,165,61,105534,102],"class_list":["post-429481","post","type-post","status-publish","format-standard","has-post-thumbnail","category-business","tag-5yearold","tag-5yo","tag-business","tag-campaign","tag-condition","tag-count","tag-counting","tag-dargaville","tag-daughters","tag-day","tag-days","tag-every","tag-expectancy","tag-for","tag-hastings","tag-ill","tag-life","tag-limits","tag-make","tag-making","tag-new-zealand","tag-newzealand","tag-nz","tag-parents","tag-rather","tag-terminally","tag-than","tag-that","tag-their","tag-to","tag-willow","tag-with"],"_links":{"self":[{"href":"https:\/\/www.newsbeep.com\/nz\/wp-json\/wp\/v2\/posts\/429481","targetHints":{"allow":["GET"]}}],"collection":[{"href":"https:\/\/www.newsbeep.com\/nz\/wp-json\/wp\/v2\/posts"}],"about":[{"href":"https:\/\/www.newsbeep.com\/nz\/wp-json\/wp\/v2\/types\/post"}],"author":[{"embeddable":true,"href":"https:\/\/www.newsbeep.com\/nz\/wp-json\/wp\/v2\/users\/2"}],"replies":[{"embeddable":true,"href":"https:\/\/www.newsbeep.com\/nz\/wp-json\/wp\/v2\/comments?post=429481"}],"version-history":[{"count":0,"href":"https:\/\/www.newsbeep.com\/nz\/wp-json\/wp\/v2\/posts\/429481\/revisions"}],"wp:featuredmedia":[{"embeddable":true,"href":"https:\/\/www.newsbeep.com\/nz\/wp-json\/wp\/v2\/media\/429482"}],"wp:attachment":[{"href":"https:\/\/www.newsbeep.com\/nz\/wp-json\/wp\/v2\/media?parent=429481"}],"wp:term":[{"taxonomy":"category","embeddable":true,"href":"https:\/\/www.newsbeep.com\/nz\/wp-json\/wp\/v2\/categories?post=429481"},{"taxonomy":"post_tag","embeddable":true,"href":"https:\/\/www.newsbeep.com\/nz\/wp-json\/wp\/v2\/tags?post=429481"}],"curies":[{"name":"wp","href":"https:\/\/api.w.org\/{rel}","templated":true}]}}