Lachie’s Story

Lachie Stephenson was a fit, fun loving and healthy 19-year-old when he was diagnosed with brain cancer – specifically, Diffuse Midline Glioma.

Lach’s family were told his type of tumour had a one percent chance of survival. Throughout his treatment, Lach and his family were determined that he would be that one percent. Right up until two days before he passed away, he was still determined to beat his cancer. He never gave up the fight.

When Lach was diagnosed, there were limited treatment options available for him. He was told he would have six weeks of radiation to try to shrink the tumour. However, he was also told it was highly likely that it would grow back in a more aggressive state. At that stage there wouldn’t be much more they could do for him.

Brain cancer is an incredibly cruel disease. It took Lach’s balance, coordination, vision, speech, the ability to swallow and then to breathe.

He endured surgery, radiation and participated in a clinical trial. He fought hard but unfortunately, it was just too big a battle for him to win.

After surgery and radiation, Lach’s family were told that he should just enjoy life, because there wasn’t much more they could do.

“I was shocked and thought ‘How can that be?’ We’re in the 21st century, how can you be telling me that I have a fit and healthy 19 year old, who just has to enjoy life and the little time he has left? That there’s nothing more anyone can do?” Lach’s mum, Amy, said.

Clinical trials were Lach’s last treatment option. At that stage, you’d try anything. You just have to.  Unfortunately, the trial that Lach was on didn’t have much of an impact for him. There were no more treatment options left for Lach.

“We cannot believe that in this day and age there is only a one percent chance of survival. It just blew us away. There are no treatment options that will make a real difference. That still gets me,” Amy said.

“Dr Jim Whittle, and the team at Peter Mac were just amazing. We were really blown away how the team really do work together. They just need more treatment options. We were so lucky to have an incredible treating team behind us. Doctors in this circumstance work together beautifully, we were able to go from hospital to hospital. They all just want the best outcome for the patient.”

“Lach’s team was amazing. Just phenomenal. We really can’t thank them enough for their support,” Lach’s Dad, Jason, said.

But those expert teams have limited tools and treatment options to attack this debilitating disease for patients like Lach.

Sadly, Lach’s battle lasted only 7 months. He passed away on 1st January 2022.

The only way to change this, to offer real hope for brain cancer patients and their families, is to urgently expand brain cancer research. To do this we need a dramatic increase in funding to drive the development of new treatments and clinical trials. By working together, we can give patients diagnosed with brain cancer real hope.

“The treatment Lach was offered was the same treatment used for this type of tumour 60 years ago. Nothing has really changed. Without more research nothing will change.” Amy said.

We want to transform brain cancer, so that it becomes a treatable and survivable disease, so that all brain cancer patients have real hope.

Lach’s family is very proud of how he dealt with this insidious disease every day. He was amazing, comforting the people around him and keeping his sense of humour.

“Everyone says it will never happen to them, but it does. Lach’s story shows that it can happen to anybody.  There is nothing that we could have done, or he could have done to prevent it,” Amy said.

Lach’s family want to see a day where no other family has to endure their unimaginable pain.

We need your support

We want to make sure that every Australian diagnosed with brain cancer has access to better treatments and clinical trials than there are currently, and to be given real hope for a positive outcome, but we need your help to do that.

We want to see a day where no family has to lose someone they love to brain cancer. We can’t do this without your support.


Donate to help families like Lachie’s