Help Willows Journey with Muccolipidosis
Our goal is to provide Willow with every opportunity we can and give her the best life we can.
Bay of Plenty
Muccolipidosis is a rare genetic, degenerative condition for which there is no cure. It effects the lungs, heart, muscular, skeletal systems as well as other medical and daily complications. Our hospital teams do everything they can to support us in giving Willow the best life we can. Mean while we do everything we can outside the hospitals to do our part. From trying alternative treatments to just providing new experiences as often as we can. This page is to help cover some of the funds we need to do this.
Eden Tilby's involvement (page creator)
I am lucky enough to be Willow's mum, and advocate in her daily journey with muccolipidosis.
Use of funds
This page is to help cover costs of a new treatment we have been recommended called ozone therapy. This will help improve her oxygen levels and metabolic processing. If there is any extra it will be used to cover other alternative therapies.
Latest update
Funds update 13 April 2022
Thanks to everybody’s generosity we have not only reached our goal to be able to do ozone therapy with willow but we also have enough to explore other therapies and experiences that we otherwise may not have been able to afford. While we never expected such an amount we are so grateful to now have so many other opportunities for our daughter. At the request of others we have left this page open for donations. Any funds that are still coming in will continue to be used to provide willow with the best life possible. We thank you all for your kindness.
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