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After an arduous and soul-destroying battle with Lyme disease and related health issues, on Saturday 7 August 2021, courageous, kind and beautiful 19-year-old Daisy Long ended her life.

Daisy received treatment for her illness at a Cyprus clinic several years ago, and even went on to study successfully at university. But she was left with overwhelming PTSD due to the protracted loneliness and isolation of her illness.

Despite her unimaginable grief, Daisy’s brave mother Sally has honoured us with a message to share with our Lyme community and the world.

On behalf of all LDAA members, we extend our deepest and most heartfelt condolences to Sally, as well as Daisy’s father Andy, sister Tiggy, extended family members and friends.

“Due to Covid-19 lockdowns, we can’t see nor be with those whom we love and need to hold. My family are people who take great comfort in hugs and talking; hearing those words ‘I love you’. As I sit here numb and robotic, my way of sharing with you has been reduced to being by technology, but hey thank goodness we have it, because your [Sharon Whiteman’s] messages are what is getting me through this time.

I ponder how many people are struggling, and yes, we must ask those people R U OK? But we need to follow up with them over and over, and sadly sometimes even that is not even enough but do it anyway.

Daisy left us with a letter she would like shared publicly about the failings of society and those that get left behind. Her father, Andy and I will decide if we do publish it or not. For now, it gives us further insight into the deep wrongs of the world that she couldn’t wrap her head around, starting from when she first became ill with tick borne disease at age 13.

My god what a fight and a challenge that was but shouldn’t have been. I have never fought harder in my life; it took years of challenging the medical world in a country where this disease supposedly doesn’t exist!! What a shit-show that was, it robbed her of 4 years of her life and rightly or wrongly, nearly killed me.

Daisy was a deep thinker and was so incredibly smart, which is both good and bad. We kept telling her she couldn’t change the world, but to take baby steps to help others where she could. That was not enough for Daisy, and it saddened her beyond belief.

Her health finally got better, and off she went excitedly into the world with our blessing and excitement, only to turn around a few days later and come home! She then shook herself off and started uni. She achieved high distinctions in her Psychology degree (this is a child who had missed nearly 4 years of school). She was so motivated, a do-er, a fighter, and so smart and mature in so many ways. But again, that was taken from her when uni classes went online, and lockdowns began.

We tried everything in our power to help her, but it wasn’t enough. I will say this, she was hugged and told she was loved every single day. We wish we could have done more for her questioning mind and empathetic heart, but it was all too much! Fly high darling”.

Daisy did not want another family to suffer through what hers did as a result of Lyme and Australia’s health policies around tick borne illness.

As a way of honouring her wishes, you can sign the LDAA’s petition to the Australian Government, which implores it to take urgent action for patients, and specifically, to immediately withdraw the dangerous DSCATT Clinical Pathway.