Love for lost sons lives on with brutal trek

Brett and Michelle Paulsen have suffered loss most are fortunate to never endure.

WALKING STRONG: Brett and Michelle Paulsen will take part in the Bloody Long Walk to raise funds for the Mito Foundation. Picture: John McCutcheon

BRETT and Michelle Paulsen have suffered loss most are fortunate to never endure.

Both of their sons' lives were cut drastically short after losing their battle with mitochondrial disease.

"It's a constant grieving. You never get over it,” their father, Brett, said.

Less than a year has passed since Hayden, 14, said his final goodbyes to his loving family.

His younger brother, Jacob, died in 2014. He was three.

Despite their physical challenges, Brett said their go-getter sons lived their short lives to the fullest.

"The boys just had an absolute, fantastic passion for life even considering all their difficulties,” he said.

"They were absolutely amazing.”

Hayden and Jacob Paulsen had a special bond as brothers. Picture: Contributed

Inspired by Hayden and Jacob's contagious positive attitude, the couple are taking on a gruelling 35km trek to keep their memories alive.

The Bloody Long Walk is coming to the Coast for the first time on a mission to raise funds for the Mito Foundation.

Ensuring a greater focus on research for the disease is provided hits home for Brett and Michelle.

"Hayden never actually had an official diagnosis until less than a year before he passed,” Brett said.

"We were told that absolutely nothing could be done.

"So to be able to do this walk and hopefully contribute to research so when parents are told the news we were, there might actually be something that can be done.”

Brett said training to reach a goal out of admiration for their boys has brought back a lot of happy memories.

"After Jacob was born, we told Hayden he was going to be like him and have a disability. Hayden had the attitude of 'I'll look after you little brother', and Jacob just loved him,” he said.

"Those two boys were very close, and had a really special bond.

"Everyone is missing them terribly, so this walk helps to keep their memories alive.”

Hayden and Jacob Paulsen with their older sister Hannah. Picture: Contributed

Raising awareness of the particular type of mitochondrial disease the boys had, Leigh syndrome, is important to Michelle.

"We want people to get diagnosed sooner than Hayden was,” she said.

"It's a pretty unknown disease so getting awareness out there to help others has given me something to focus on.”

Mito Foundation project manager Jane Hudson said she is grateful for those who spread their message.

"The walk is a chance to communicate with people about the work the Mito Foundation does and how it benefits all affected,” she said.

The Bloody Long Walk will be on June 16, beginning at Tickle Park, Coolum Beach, and finishing at Mooloolaba Beach.

To donate, search Team Hayden and Jacob Paulsen on the Bloody Long Walk's website.

Originally published as Love for lost sons lives on with brutal trek