#hopechangeseverything

Sometimes in life, you will meet someone that will change you in ways you could not imagine and inspire you to be a better version of yourself.  I have been extremely lucky to have cross paths with Daniel and been given the honor to share his story…

                You would describe Dan as a guy that very much loves life (and his super wonderful partner, Krystle).  He was super fit, cycled and ran daily, loved travelling and a passionate mountain climber that has climbed many mountains around the world. 

At the end of 2011, at the age of 37, he noticed a faint and constant twitch in his left bicep.  Stubborn by nature, Dan left it for several months before finally paying a visit to the doctor.  After many visits, referrals and tests, Dan was diagnosed with Motor Neuron Disease (MND), specifically Amyotrophic Lateral Sclerosis (ALS) in September 2012. 

MND is also called ALS and Lou Gehrig’s disease.  MND is a rapid progressing neurological disease and often begins with weakness of the muscles in the hands, feet and voice.  People with MND become increasingly disabled.  Life expectancy after diagnosis is 1-5 years, with 10% of people living 10 years or more. 

He was told there is no treatment, no cure and over time his muscles would waste away until eventual death.  Having a PhD in Biochemistry, Dan researched other diagnosis and treatment options.  The neurologist dismissed any other options Dan proposed like stem cell or other illness like Lyme disease or heavy metal poisoning, and proceeded to give Dan an end of life form which asked if he wanted to be resuscitated if he died.  Like anyone in his position, he ‘politely’ declined and never saw the doctor again.

He was given no hope, only a way of managing death.

Determined to not give up, Dan and his partner researched into other treatments, which has taken them to Switzerland and US for several months at a time and a few times a year.  It was in Zurich where Dan was diagnosed with Lyme disease.  Dan received micro vesicle treatment (an excretion of stem cells) every 6 months in the hope of halting the disease and hopefully eventually repairing the damage

Despite all efforts to date, Dan’s condition has continued to deteriorate.  Dan now needs full time care, he has lost the use of limbs, his core and neck have weakened and is losing the ability to speak.  Refusing to give up Dan, continues with assisted personal training every day to help preserve and strengthen his body.

Dan’s partner Krystle continues to work full time while at the same time being Dan’s primary caregiver.  Despite everything Krystle continues to care for her team, mentoring and supporting team members through opportunities and growth.

Despite the extreme challenges, both Dan and Krystle maintain a positive outlook. Neither have lost faith that life can be turned around.

Their story serves as a reminder of how delicate life can be and to never forget that time can pass so quickly that you won’t even notice until it begins to show.  So, have the courage to live a life true to yourself, don’t work so hard, express your feelings, stay in touch with family and friends, let yourself be happier and don’t take life for granted… Tomorrow is promised to no one.

I will never have enough nor the right words to express my gratitude of what they have brought into my life, but they have shown that once you choose love and hope, anything is possible.  I know Dan is a fighter and I want to help give him every possible opportunity to continue his fight. 

For someone that does not enjoy or built for long distance, I decided to take on “The Bloody Long Walk”, a 35km challenge on 5th November, 2017.  I hope you can all dig deep and help.

#hopechangeseverything

Donations ()

  • Danny Degen 
    • $50 
    • 28 mos
  • Oscar Zamora 
    • $50 
    • 28 mos
  • Murray O'Grady 
    • $25 
    • 29 mos
  • Lisa Armstrong 
    • $100 
    • 29 mos
  • The Dlugosz's 
    • $100 
    • 29 mos
See all

Organizer

Beck Lais 
Organizer
Oakleigh East, VIC
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