Making memories for Grace

$15,050 of $20,000 goal

Given by 324 generous donors in over a year

Making memorable memories for a little girl with a rare genetic condition, same condition that took the life of oldest sister.

Hamilton, Waikato

Grace is little 4 year old girl, who has a rare genetic condition called PCH6, which is unfortunately terminal. Grace’s older sister Anita passed away from this condition in 2019 at 6 years old.

Grace has been blessed by many who helped raise funds for a life changing trip, to go on a Disney cruise. Grace loves travelling, music and Disney movies, her favourite is Moana and Tangled. She smiles at these movies.

See our old page here: https://givealittle.co.nz/cause/amazing-grace-needs-our-help-to-make-memories

Page Update: Grace’s health has been stable, but she has some changes to everyday life. Her vision has changed and we aren’t sure how much she can truly see. As she takes awhile to focus. She has been referred to low blind vision. She does respond to hearing as she smiles to music and any funny sounds like sneezing etc. She is still randomly vomiting, which has been happening since December 2023 before her permanent feeding tube. When she vomits she is prone to aspiration pneumonia. She relies on 24/7 care as she unable to do anything for herself. She still has seizures and we are waiting on starting a new diet to help with the seizures, which she will need to be admitted in hospital for because of her complex condition.

We are trying to do as much as we can with Grace before her time runs out

Thank you 🙏🏻

*funds to help create memories. I’m unable to edit use of funds below

Funds will cover accommodation, tickets, petrol, food and things to keep her comfortable and happy

Use of funds

Funds will be used for any medical treatment onboard the Disney Cruise that Grace may need, and money left or unused, will be used to create other memorial trips for Grace.

Update 4 February 2026

Grace’s vomiting has settled a lot, but still vomiting at night at end of her feeding and her last lot of medication. So she not getting a full dose of medicine from the vomiting. This is still a bonus with reduced vomiting. Grace gets very hot in her wheelchair during summer.

Grace sleeps with me, but she now needs a hospital bed. We now need to look at a SAMi seizure camera alarm system for her hospital bed. She will go into the room Anita was last seen alive in, so lots of emotions. So want to make sure things are in place for Grace.

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