Three-year-old Grace Jessop has a rare and terminal genetic condition that took the life of her sister in 2019, so time is of the essence when it comes to making memories.

The Hamilton girl is heading off on a Disney-themed cruise this week but her mother, Lisa Jessop, is now worried about the additional costs that may skyrocket if Grace needs medical treatment on board the ship.

Jessop told the Waikato Herald the costs could be over $15,000, something she didn’t know she needed to pay before disembarking the ship later this week.

In 2022, Grace was diagnosed with Pontocerebellar hypoplasia type 6 (PCH6), three years after her sister, Anita Annan, died at the age of six due to the same condition.

PCH6 is a condition, within a rare heterogeneous group of neurodegenerative disorders, that alters brain functions and typically manifests in the prenatal period. A child inherits the condition when the mutation gene is passed on from both parents.

When Jessop learned Grace had the same condition, it was “a nightmare all over again”.

Anita Annan when she was 4 years old. Photo / Supplied

“I thought this was a new chance, a fresh beginning, and unfortunately not. I thought straight away that I’m going to have to bury another child.

“It’s sad losing one and now I’m losing another.”

She’s already purchased a plot for Grace at the Hamilton Park Cemetery and Crematorium on the Apple Blossom lawn where Anita is buried.

The plot she originally wanted, next to Anita had been reserved, but Jessop was able to do a “plot swap” which she’s very happy about, as now both her daughters will lay to rest next to each other.

Grace’s health has declined a lot faster than Anita’s in terms of age and last year she “went downhill really quickly”.

“She stopped crawling, it started taking her longer to eat, and then I pushed to get a permanent feeding tube and then her seizures started. She lost her head control and couldn’t really sit.

“She started showing similarities to her sister but earlier on than her. Anita started going downhill around Grace’s age now, and for Grace it was a year in advance.”

Grace’s seizures are weekly and require emergency medication. Her daily movements also consist of tremor shakes.

It’s because of this quick decline that Jessop wants to do as much as she can with Grace “before it’s too late”.

Grace has seizures weekly that requires emergency medication.

“It will be nice to take her to places like the zoo and Butterfly Creek, she loves being out. Anita passed away at 6 and I feel like I need to do as much as I can with Grace until she’s 5.”

The family of three, including Jessop’s nine-year-old son, who will be celebrating his 10th birthday on the cruise, were blessed enough by people on a previous Giveallittle to help Grace go on the trip; she “loves Disney”.

It’s a “trip of her dreams” for the Moana-loving girl, and it’s the best Jessop could pull off without needing to board an international flight to Disneyland.

She thought the trip was financially achievable until she realised that additional medical costs could skyrocket on the cruise.

“One of the parents on the cruise last year told me someone needed to go to the medical room and it cost over $4000 for seizure-related stuff.

Hamiltonian Grace, 3, was diagnosed with a rare genetic terminal condition in 2022, the same condition that took her sister's life in 2019.

“I rang one of the emergency evacuation places and they said if the cruise is on New Zealand waters it would be covered, but if it’s outside it would cost over $8000 for an hour.

“They also said sometimes you need two helicopters due to the weather, that’s over $16,000. They said I can pay it off later but for the onboard medical treatment, I still have to pay beforehand.”

It was a “big worry at the back of my brain” if something happened to Grace, and any extra financial help would be a “massive safety net” for them.

“And if we don’t need it then it will be used for her to continue making memories. I’m trying to do everything to give Grace more of life.”

If anyone wants to donate towards the additional costs that could occur on Grace’s trip, they can do so through this Givealittle page.

Malisha Kumar is a multimedia journalist based in Hamilton. She joined the Waikato Herald in 2023 after working for Radio 1XX in Whakatāne.