Ben Reilly & family MND fund

Ben Reilly... literally one of the BEST guys around!

For those who don't have the privilege of knowing him, he's a loving husband to Emma (coming up to 16 years!) and brilliant father to three boys Van (12), Cole (10) and Dash (8). He's an amazing son, brother, uncle and friend who has so much love to give that he's also been a foster carer for the last two years. Ben works as a teacher and year coordinator in a high school, working hard to bring out the best in young people. 

46300596_1584664118466531_r.jpeg

For months Ben had been having trouble with his tongue and speech, along with a slanted lip. His GP tried ruling out a stroke or allergy and thought he most likely had Bells Palsy. Five months later Ben went in to Fiona Stanley Hospital, was admitted to the Neurology ward, went through a mammoth amount of tests and then on Friday 7 February 2020, the news was given that Ben had MND (Motor Neurone Disease), which completely turned the whole world upside-down for Ben, Emma and extended family & friends.

At the moment Ben has Classical ALS Bulbar MND which is affecting his speech, eating and swallowing, for a teacher this is a huge issue as communication is a major part of his job. There is uncertainty around how long Ben will be able to maintain his teaching role which is his livelihood and what supports his family.

We are currently waiting on genetic testing to find out what clinical trial treatments might be available to Ben. He had an Aunty who sadly passed away from MND several years ago, but there was no awareness of a genetic link then. Ben is currently taking Riluzole which is the only approved drug to slow progression of deterioration by 5-10%. 

Ben & Emma have been advised by their Neurologist to prepare for the future and enjoy life with family as much as they can whilst Ben is still able. One of the big focal points right now is Ben's quality of life and being able to make many beautiful moments with his family happen. 

46300596_1584664140390363_r.jpeg

Practically, there are plenty of costs involved when a diagnosis of MND is given; future loss of income, medical expenses, travel for treatment, obtaining passports should the need for rapid international travel arise, suitable accommodation to suit Ben's needs and general living expenses. Ben & Emma do not own their own home, this is an important consideration for them as things progress, with the potential need for a home to be fitted out to support specific disability requirements.

We don't know what the future holds but we, along with Ben & Emma, are holding onto hope that there is a clinical trial available to Ben to extend his life by stopping the progression of this disease. We also trust God with all that we don't know and all that Ben & Emma need to get through this battle. 

We thank you for your prayer and financial support. 

Should you have any questions, please ask us. 

Tam & Chelsea

Donations ()

  • Chris Dorey 
    • $20 
    • 4 hrs
  • Priscilla Howard 
    • $44 
    • 1 d
  • Chet Williams 
    • $44 
    • 1 d
  • Mark Parks 
    • $44 
    • 1 d
  • Anonymous 
    • $5 
    • 1 d
See all

Fundraising team (2)

Tam Jones 
Organizer
Raised $1,780 from 14 donations
Manning, WA
Chelsea Jones 
Team member
  • #1 fundraising platform

    People have raised more money on GoFundMe than anywhere else. Learn more

  • GoFundMe Guarantee

    In the rare case that something isn’t right, we will refund your donation. Learn more

  • Expert advice, 24/7

    Contact us with your questions and we’ll answer, day or night. Learn more