Xanthie’s Fundraiser

Dear Friends, Family and Wider Community.

Today we have reached the very humbling decision to reach out for help to support our beautiful little girl, Xanthie.

Xanthie is a bright and beautiful 19 month old little girl with a rare genetic disorder by the name of 22q11.21 duplication syndrome. 22q duplication is considered as a risk factor for intellectual disability and developmental delay.

This disorder affects Xanthie in many ways, but the thing that we believe holds her back the most is her struggle to mobilise.

Xanthie is not yet walking, as she struggles with Hypotonia, low muscle tone, weakness and global development delay. She is able to army crawl in her own way for very short distances before getting tired and needing to have a rest.

As parents, we see children half of Xanthies size at her daycare that are able to run around and play and unfortunately for Xanthie she is not there yet and will not be able to begin walking without assistive aids. We see it in our little girls eyes that she is frustrated and wants to play like the other children and it’s heartbreaking every single day.

Today we are reaching out to raise funds for an assistive walker for our little girl so that she can start her journey towards freedom.

A specially fitted and designed walking frame on wheels would hold Xanthies weight for her and enable her to begin moving her legs in a standing position and play with the other children at eye level. She may even be able to chase after them like I know she so badly wants to.

Right now Xanthies medical bills are upwards of $500 per week for her therapies and as much as we would love to buy a walker for Xanthie immediately it just isn’t within our means.

We have begun the process to have Xanthie approved for NDIS, however the waiting times are months long to even get our foot in the door and Xanthie needs support now.

Xanthie’s Physio and Occupational therapist have recommended an assistive walker for Xanthie as soon as possible. We have a goal of $7,000 which would cover the cost of Xanthie’s Walker and additional costs to get her fitted and any other attachments she may need (leg brace supports etc)

Any amount exceeding our goal will go towards custom ramps, specially fitted orthotic shoes and ongoing therapy expenses.

Every contribution, regardless of size, holds immense value for Xanthie and her freedom.

Thank you.