For those who don't have the privilege of knowing him, he's a loving husband to Emma (going strong for 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 worked as a teacher and year coordinator in a high school, working hard to bring out the best in young people, until recently...
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. This has now impacted Ben in his inability to maintain his teaching role which was his livelihood and supported his family. He is currently on sick leave and then long service leave which will provide regular income until July. He has his final farewall at work next week which will be very hard. Emma has begun looking for work but there is a balance of needing to be available to support Ben with appointments and being 'his voice' as his speech has progressively become worse. Ben is unable to communicate clearly and finds it extremely exhausting to talk. He is having to use his phone to write for communicating and has tried some text to speech apps.
Ben is losing strength in his arms and hands which is making it difficult to do household chores, driving, buttoning up pants & shirts and even typing messages is getting harder. The next step may be to look into alternative solutions for communicating such as a device called a Neuronode, but they are very expensive, possibly $10,000 - $17,000. Ben's sleep has been impacted as he struggles to breathe at night, he is already propped up but needs a vpap machine to help, we are waiting on this. Ben & Emma are also looking at a specially trained assistance dog for Ben, not funded by NDIS, to provide companionship and support for the future.
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%. Due to COVID-19 there has been a delay in getting the results.
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.
Practically, there are plenty of costs involved when a diagnosis of MND is given; 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. Ben has been approved for NDIS which will provide some extra support soon.
The boys are going okay, having up's and down's, sad about dad at times and they can see his struggle when he tries to talk with them. Ben & Emma's hearts break that Ben can't help them with homework or read them a book at bedtime.
Through it all, Ben has remained his positive self, making us laugh through his difficulties. He posts videos on Facebook about his struggles and raises awareness for MND. 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
- Emma Norman
- Rebecca Hogan
- Rayna Petersen
- Deb n sean Barnes
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