Hamilton mum finds out second daughter has same rare, fatal condition that claimed life of her first

Grace Jessop has the same rare genetic condition that her late sister Anita Annan had. Photo / Mike Scott

A Hamilton mum has already bought a plot at a cemetery for her little girl - her second child born with a rare, terminal genetic condition that claimed the life of her firstborn.

Lisa Jessop is living heartbreak all over again after finding out that her 14-month-old daughter Grace has Pontocerebellar hypoplasia type 6 (PCH6) less than four years after her daughter, Anita Annan, died at the age of six due to the same condition.

“It was heartbreaking,” said Jessop.

“I know the outcome will be the same. I know that I am going to have to bury my child, another child.”

Cheery 14-month-old Grace Jessop has a rare genetic disorder which is likely to end her life in childhood. Photo / Mike Scott

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.

For most of Anita’s life, Lisa was left wondering what was wrong.

The first signs appeared when she was 9 months and started having tremors. As she got older she declined quickly - eating became dangerous as she would aspirate her food, she would get pneumonia, she lost mobility and she had seizures nearly daily and to the point where she needed emergency anti-epileptic medication and oxygen at home.

Anita Annan when she was 4 years old.

On March 12, 2019, Anita was rushed to hospital after Jessop found her seizing. As her oxygen levels dropped a doctor made the decision to put her in an induced coma.

Three days later she was taken off life support and she took her last breaths in her mum’s arms.

Unfortunately, it wasn’t until after Anita had passed away that Jessop got answers to what the condition really was having only been told prior that it was epileptic encephalopathy.

“At the time, even though she had genetic tests sent overseas it was actually a lab here in New Zealand that found out what it was... I got a call from Otago University saying that she has this condition and how rare it is,” she said.

While the road for Grace is unclear, Jessop has already purchased a plot at the Hamilton Park Cemetery and Crematorium on the Apple Blossom lawn where Anita is buried.

Unfortunately, the plot next to Anita has already been reserved and Jessop is desperately trying to find the owners.

“It’s been purchased but it’s empty and I’ve been trying to find the owners to be able to ask to do a plot swap because that will mean quite a lot to me to have them right next to each other,” she said.

Maria Barrie, Hamilton City Council’s unit director, parks and recreation, said the authority empathised with the Jessop family and the sad situation they face.

“We are working directly with them and will do everything we can to help. We also need to remain mindful of the family who have purchased the plot left of Anita and their circumstance, and respect their right to privacy.”

Grace's mum is hoping to do a plot swap so that her daughters can lie next to each other at Hamilton Park Cemetery. Photo / Mike Scott

In the meantime, Jessop said she wants to do everything she can to provide Grace with the treatment and care she would have wanted for Anita.

Grace is currently in a stable condition, but Jessop has noticed she has started falling over as she moves.

She is hoping to take Grace into one-on-one physical therapy once a week and hydrotherapy to delay the need for a wheelchair for as long as possible. Both of these therapies are not subsidised.

“With Anita they didn’t know what she had and they just wanted to do test after test and now that I know what it is, what will happen and what to look out for, I want to try and prevent that. I want to try and keep her as mobile as possible and keep her comfortable,” said Lisa.

The extent of doctors and hospital visits for Grace is not yet known, but if her sister’s experience is anything to go by, it will likely become weekly.

Friends have rallied around Jessop to help raise funds for Grace’s therapy, treatment and equipment such as a specialised buggy by setting up a Givealittle page and a raffle.

Jessop recalls not even being able to afford medication to help with Anita’s seizures as it came in at $250 a week and cannot fathom what might be required for Grace.

“I just need a little extra support because I know what I’ll be going through again and I want to try and give Grace the best start,” said Jessop.