Making memories for Grace
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.
Latest update
Seizures 22 April 2026
This morning Grace has multiple seizures. She okay and quite exhausted, she is having snuggles with one of her cats. I’m still waiting to hear about increase in her anti epileptic medication, as the seizures have gotten worse.
Grace is due for surgery soon in the next month to replace her GJ tube that goes into her small intestines. She is still vomiting in the evening at the end of her feed and meditation. No matter how I spread her medication or wait earlier or later. She just still vomiting and we not sure why.
I’m personally going through some health issues, which are being investigated at the hospital. I have an infusion and multiple blood tests this month to find out what’s going on. So a lot has been happening this month, for Grace and I.
*Photo of Grace this morning with her cat*
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