Adelaide mum’s heartbreaking reality of bringing up three children with terminal illness

This happy image of a proud southern suburbs mum and her three gorgeous, “blissfully unaware” kids masks the tragic reality of their terminal illness.

Renee Staska with her three young children, Hudson, 7, Austin, 4, and Holly, 6, who tragically have a type of juvenile dementia, a progressive and terminal illness. Picture: Naomi Jellicoe

The image of a proud Adelaide mum and her three gorgeous, smiling kids masks the tragic reality of the young family’s life.

Each of the children – “sensitive and sweet” Hudson, 7, “firecracker” Holly, 6, and “animal-loving sweetheart” Austin, 4 – has Niemann-Pick disease (NPC), a form of juvenile dementia, which is a terminal illness that will most likely mean none will reach their 20s.

Mum Renee Staska, who has been bringing up her young family on her own for the past two years, says while her heart is breaking she tries to make the most of every day.

“I do have days that are harder than others … but I want them to be brave so I have to be brave for them and make sure we make the most of every day,” she said.

“It is tricky, because they are still normal little kids, they are still naughty at times and need telling off … they still need to eat their veggies.

“All you want to do is cuddle them up and give them everything you possibly can … but you also have to lead a normal life, you have to keep going. For now, they are blissfully unaware (of the prognosis).”

The bombshell diagnosis came soon after her youngest son was born, following complications discovered during a scan when she was 28 weeks pregnant.

After being born with an enlarged liver and spleen, baby Austin was put under the care of specialists at Adelaide’s Women’s and Children’s gastroenterology unit.

While his liver function slowly improved, it took longer than the medicos hoped.

“They ran some gene panels which came back with NPC … it was a complete bombshell as I had never heard of it before,” Renee, 30, said.

Hudson, 7, Holly, 6, and Austin, 4 all have a rare genetic disorder called Niemann-Pick Type C. The terminal illness falls under the umbrella of childhood dementia. Picture: Naomi Jellicoe

Hudson and Holly are each beginning to show symptoms of the progressive illness, but remain all-smiles thanks to endless amounts of love from their mum Renee. Picture: Naomi Jellicoe

Austin’s older siblings were tested and also found to have the disease.

“I was told I needed to take them home and love them … that there was nothing we could do (but) make some memories,” Renee said.

“I got introduced to palliative care … the kids now have a neurologist, do physio, occupational therapy, speech therapy and hydrotherapy … to keep them as strong as they can be.”

Hudson and Holly are each beginning to show symptoms of the progressive illness.

“Fine motor things are really tricky for them, concentration is hard and they have a sort of a hand tremor – called an intended tremor – which is apparent when they are trying to do things like thread a bead or write … they also tend to get sick quite often,” Renee said.

“Most children get to about school age and start falling behind and then have trouble walking and it progresses from there … it is a terminal condition, basically (my kids) will just lose all their abilities and everything they have learnt.”

Beyond the heartache, Renee said being mum to children with a rare terminal illness was isolating.

“Most people haven’t heard of it … it is kind of terrifying that you are facing this battle and no one wants to talk about it,” she said.

It is for this reason she wanted to share her southern suburbs family’s story with the Sunday Mail.

“Ultimately I want a cure … something that is going to help my kids and other kids – raising awareness is an important part of that,” she said.

“(Their childhood dementia) is always there … it is like enjoying the best day but seeing a storm cloud coming … birthdays are bittersweet, milestones are double-edged.”

According to international Childhood Dementia Initiative, one in every 2800 babies globally are born with a condition that causes childhood dementia and 75 per cent will have a life expectancy of less than 18.