Dylan Hoffman

Dylan Hoffman's mum Marie had already succumbed to the "family curse" and his dad John was battling cancer, when he was told he too would die from the hereditary Huntington's disease.

Over the next decade, the incurable neurodegenerative illness would rob Dylan, a passionate sports fan, of the use of his legs, arms and speech.

By his mid-20s he was living in disability accommodation, at Briarholm in Kingswood, reliant on 24-hour care.

Dylan died on June 19 at the age of 32.

Luke Webb struggled to watch his young friend's desperate battle with the "cruellest disease", but held steadfastly to the promise he had made to Dylan's dying father John.

"He asked me to promise him that I would look out for Dylan," Luke recalls.

"It broke me a little to see how helpless John was, knowing he would have to leave his son to fight on without him."

Family, friends and carers farewelled Dylan at a service in Glenelg on Thursday, and Mr Webb delivered a heartbreaking tribute.

With his permission we share the eulogy he wrote for his inspirational friend.

Luke Webb's eulogy to Dylan Hoffman

I made a promise to John Gill on his death bed 15 years ago. He was dying of cancer, aged 43. He knew his 17-year-old son Dylan had Huntington's disease, which Dylan's mother had died of a few years before.

I promised I would look out for Dylan and check in as much as I could. It broke me a little to see how helpless John was, knowing he would have to leave his son to fight without him.

Dylan died yesterday (June 19) after a mammoth fight with the cruellest disease. He was only 32 years old.

In the years my family and I shared with Dylan, we took him to Queensland, he worked for me until he couldn't. He would come to my gigs, we would go over and watch UFC.

We would all go out to the botanic gardens, the city, birthday parties, Christmas parties, Sunday visits and weekday drop-ins.

It's hard to believe, but I never heard Dylan complain or feel sorry for himself. Not ever. Not once. He wanted to live.

He knew his time was limited and that his quality of life would be stolen slowly, day-by-day.

Even knowing this, he still just wanted to live. He would sh*t stir everyone. He called me "food bag" for 15 years (his dad would be proud). I used to tell him I'd push him down the stairs in his wheelchair. He would laugh and say, "You would food bag!"

His face would brighten up when he saw you. He was the light in the room. Never wanting pity, just to feel as normal as possible.

When you have a friend that strong, that determined to wake up and enjoy every day, it's impossible to feel sorry for yourself.

Whenever I was going down, without even knowing it, Dylan helped me back up. Helped me to stand up straight and fight on.

Worth is not a big bank account. Worth is not looks. True worth is appreciating waking up, fighting to live.

 

It's making those people around you happy; playing UNO because you can't speak anymore; enjoying sport on TV because you can't be mobile anymore; competing and laughing and finding joy and fulfilment in the smallest achievement.

Dylan, I am so proud of how you lived. I am so proud to have had you in my life. You became a little brother, a family member. I will never forget you. I love you mate.

Originally published as 'Friend reveals deathbed promise at Dylan Hoffman's funeral'