Louise Jessop is taking on the 2021 Hike for Hope to raise money for the research into a rare disorder which took the life of her son when he was just 12 years old. Photo: Warren Lynam / Sunshine Coast Daily
Louise Jessop is taking on the 2021 Hike for Hope to raise money for the research into a rare disorder which took the life of her son when he was just 12 years old. Photo: Warren Lynam / Sunshine Coast Daily

Mum lives with a 'hole in her life' after her son’s death

In March, Louise Jessop and her family celebrated her eldest son's 18th birthday, a milestone he never reached.

At two and half years old, Dylan Jessop was diagnosed with Sanfilippo Syndrome, a condition which affects the brain and is one of a group of conditions sometimes known as "childhood dementia."

Dylan sadly passed away in July 2015 at just 12 years old.

"You never get over it," Mrs Jessop said.

"We just had in March what would have been his 18th birthday."

Mrs Jessop is speaking about her loss to raise awareness for her son's condition.

She said it was emotional to pass the milestones that Dylan had missed out on.

Louise Jessop will be heading to Alice Springs next month to take on a 60km hike through the outback to raise funds for Sanfilippo Syndrome research. Picture supplied.
Louise Jessop will be heading to Alice Springs next month to take on a 60km hike through the outback to raise funds for Sanfilippo Syndrome research. Picture supplied.

"Last year I was watching kids have graduation and Dylan should have been finishing high school … Matt should have been able to take him to the pub for his first beer," she said.

She said Dylan's younger brothers Ethan, 16, and Ayden, 12, missed him "terribly".

"Ethan only just started to say Dylan's name, that's how much of an impact it's had.

"You don't get over it, you learn how to live with a big hole in your life."

Mrs Jessop said the average life expectancy for children diagnosed with Sanfilippo is 14-18.

Brain cells fill up with waste which the child's body is unable to process and as the brain is progressively damaged, children experience hyperactivity, disordered sleep, loss of speech, cognitive decline, seizures and loss of mobility.

Louise said her family, Ethan, 16, husband Matt and Ayden, 12, were supportive of her decision to undertake the 2021 Hike for Hope. Picture: Patrick Woods.
Louise said her family, Ethan, 16, husband Matt and Ayden, 12, were supportive of her decision to undertake the 2021 Hike for Hope. Picture: Patrick Woods.

"Matt and I are carriers, so each of our kids had a one in four chance," she said.

"When (Dylan was diagnosed) there was only about 52 kids in Australia (diagnosed).

"We moved to the Sunshine Coast to try and make the most of it, he loved the beach and the water and it gave us that opportunity.

"We had bought a house we could modify to his needs, and he went to Currimundi Special School.

"We were really lucky to be under Dr Hurley, the director of paediatrics at Sunshine Coast University Hospital, and our local GP, he had to learn pretty quickly."

According to the Sanfilippo Children's Foundation the condition affects one in 70,000 children and there are now between 75 and 100 children in Australia living with the disorder.

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"Lots of doctors don't even know what it is," Mrs Jessop said.

"It's a really unheard of condition, it doesn't get a lot of attention.

"It doesn't get a lot of funding into research, but the Sanfilippo Children's Foundation was set up by a couple in Sydney after both their children were diagnosed.

"It's to even find a treatment, not just a cure."

Louise is hiking 60km across outback Australia in memory of her son Dylan who died in 2015 and to raise awareness of the rare Sanfilippo Syndrome. Picture: Patrick Woods.
Louise is hiking 60km across outback Australia in memory of her son Dylan who died in 2015 and to raise awareness of the rare Sanfilippo Syndrome. Picture: Patrick Woods.

Next month, Mrs Jessop will be embarking on a 60km trek through the Australian outback with the aim of raising funds for vital research projects which show potential to halt disease progression, repair damage caused by the condition or improve the quality of life for children suffering from Sanfilippo.

"It's probably going to be quite an emotional experience for me," Mrs Jessop said.

"It's going to be a big challenge … but it's nothing compared to the challenge facing kids with Sanfilippo and their families."

To donate or follow Mrs Jessop's journey click here.



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