Making the Days Count for Willow

$3,815 of $10,000 goal
Given by 53 generous donors in around 5 months

Facing a life of challenges, help make the days count for our sweet Willow.

Hawke's Bay

Willow is a brave 5 year old girl facing a life of difficulty with a smile on her face. Willow has muccolipidosis type 2, a rare genetic condition that affects her muscles, heart, lungs, development and just about every other part of her life you can imagine, including unfortunately, life expectancy. Yet no matter how many hospital or therapy appointments she attends she continues to find joy each day.

Through this tough journey, we made the decision that we would not count the days, but make the days count. However with rising costs of living it is becoming harder to treat her to experiences outside her daily bubble. It is only with the continued support of our amazing wider community that these continue.

Funds raised goes towards making a difference in Willow's life; from giving her experiences that she wouldn't otherwise get to experience such as zoos (she loves animals), travelling to see family, experiencing new foods, right through to things like custom equipment that help make her life more inclusive and complementary/or alternative therapies not covered by our health system but make huge difference in how she can handle day to day.

We know times are tough for everyone out there so are under no expectations of donations, but every dollar is a blessing we others would not have to give and is appreciated beyond words.

Previous funds raised have allowed us to; purchase an ozone therapy machine, add activities such as the zoo to starship visits and experience snow and more.

https://givealittle.co.nz/cause/help-willows-journey-with-muccolipidosis

Eden Tilby's involvement (page creator)

I am blessed to be Willow's Mother. I am overwhelmed for what the wider community has made possible for our daughter so far and beyond grateful that people care for her as much as we do.

Use of funds

16/04: All money raised will go to expanding Willow's experiences in life and supporting her daily needs caused by this condition; from giving her experiences such as zoos, travelling, new foods, to custom equipment that help make her life more inclusive, unfunded complementary/alternative therapies. Our next big experience we hope to achieve is a trip to south island to show her the wildlife parks.

14/09: Funds will go towards living costs

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Latest update

Update on Willow  12 September 2026

Sadly our make a wish trip has not gone to plan with willow being flown to Dunedin in critical condition whilst we were touring the South Island. She is now stable but it is an indertermined time as to when we will be able to get home. Funds will help us continue to pay bills and cover cost from our extended time from home as she recovers.

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Latest donations

Michelle
Michelle 22 mins ago
Kia kaha beautiful
$50
Sammy
Sammy 31 mins ago
Kia Kaha Willow 🫶🏽
$30
Steph
Steph 37 mins ago
$50
Clare
Clare 41 mins ago
All our love Willow, Chase and Eden from Pudney Hub 💛
$100
Emilie
Emilie 42 mins ago
Keep fighting beautiful girl. Lots of love to you all whānau. xx
$80

Who's involved?

Eden Tilby's avatar
Created by, and paying to a verified bank account of, Eden Tilby on behalf of Willow Dargaville
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This campaign started on 16 Apr 2026 and ends on 16 Apr 2027.