Spring 2017

I cannot believe that 9 months have gone by since my last update!

We were warned at the outset when establishing the R. W. Foundation that foundations by nature, generally have great momentium initially, but then experience ” fatigue” by  losing support.

I’m proud to say that Southern Lone Star have chosen R. W. F. as one of their beneficiaries. This organization is headed up by Andre Redinger and Matt Dove who are both local “stock” and we feel strongly about many of the same things. I encourage you to take a minute to watch this video, to see the kind of people they are, and the crazy things they do. https://vimeo.com/231049052.

We look forward to a long relationship with Andre, Matt, Rob and their team at Southern Lodestar Foundation. 

So to get back to the fatigue that some foundations experience, I need to thank everyone who has made sure we have had enough “gas in the tank” to keep fighting this illness and not give in to the fatigue.  Big thanks to… The Crawford La Lucia  7-a-side tournament – it was a great weekend and well attended. Richard Kohne and his team did a wonderful job again and I thank them for including us in what is a brilliant show case for school sports.  Rob Kleinloog, Colin Emmanuel and Nick Jonsson who host the annual Netherwood Angus Elite Sale, always contribute to the R. W. F. very generously from the proceeds. So I would like to sincerely thank them all for their continued support.  Two of my closest friends ran the 50km Mont Aux Sources trail run, so thank you both for helping us with A.L.S. awareness. A big ” shout out” “to Hillary from AnyLogos in Howick for all her help with our branding.  SEEDCO for your ongoing generous donations!  To DEKALB  and Kevin Gotty, who kindly donated all of last season’s maize seed to my farming operation at no cost. Francois Marais, Butch Pike and the Mascor team have very generously loaned me a John Deere Gator. I love it and it makes getting around the farm an absolute pleasure as well as allowing me to be actively involved.  Our old neighbours and family friends Ed and Kay Frank who have helped us with some very smart wheel chairs. Our Doctor, Grant Lindsay is a constant source of information, guidance and advice, we are sincerely grateful to him.

Gary and Nikki Teichmann had a combined birthday recently and instead of receiving gifs, they asked their friends and family to contribute to the R. W. F., which they all  did very generously. Thank you both and your family/ friends for your kindness. Gary recently arranged for the Sharks rugby team to present a jersey to me before one of their games. I wasn’t expecting it at all and was very touched by the gesture.

When I was  younger and studying for something, I would highlight all the important things in a bright color to make sure that I would remember these, instead of all the mundane things in between. I have these ” highlighted” moments more and more often now, and I am sincerely grateful for this gift. I would like to share 1 with you.

YESTERDAY shouldn’t define you, but it is an important reminder of how far you have come and is a gentle guide back to your roots should you lose your way.

TODAY  is a choice. What you choose to do with today is the most important choice of your life.

TOMORROW, nobody promises us a tomorrow, we could be gone tomorrow,  but miracles do happen, and if there is a tomorrow, treat it with respect.

Paula administering the IV with a not-so-sure Emmie looking on intrigued.

It has been 5 years and 5 months since my first symptoms. And 4 years since I was officially diagnosed. I recently  bumped into the neurologist who originally diagnosed me. I chatted to him for a while and as I walked away, in my ungraceful stagger, Paula, who was a bit behind me, caught him staring.  “I can’t believe it” were his words as Paula passed him. If statistics and doctors  are what we are going to base my progress on, I am doing incredibly well. For this I will be eternally grateful to everyone who has been a part of this journey, especially my amazing wife Paula who is my rock, my girls who keep me laughing and my family and friends who have been there at every step.  If you ask me, I still think that I have a chance to beat this illness, but it is going to take something miraculous or someone exceptional.  Please don’t think for a second that I am resigning myself to defeat – I never will. I took my first necessary ride in a wheelchair recently. I hated every second because it was one of the biggest concessions I have had to make. It felt like the opposition had just “kicked 3 points” and there was only 5 minutes left in the game.

We have recently started another drug called Endevarone from the U. S. It is only the second drug ever that the FDA have approved for the treatment of ALS. It is an I. V.  medication administered daily, so I have had a Port-a-cath inserted into my chest. The suggested protocol is 14days on, then 14days off. We have just started our 2nd run, and hope that it will live up to our expectations. Thank you to Charles and Sue Touzal for their advice and guidance with the medication.

I am still actively involved in my farming operation, albeit in a more advisory role and less hands on. The farming community have rallied around us from day 1 and continue to do so. The next planting season is here and with hard work and a lot of rain, I hope it is a great one for everyone.

I have found a meaningful amount of comfort in the random chaos of LIFE. In my opinion I think it is impossible to fully understand how the pieces of the “puzzle” all fit together, but I am OK with that.  LIFE HAPPENS all around us and it is not PERFECT, but there are some pretty amazing pieces if we look closely.

I feel desperately cheated out of time, especially time with my family. But mostly, I feel a huge amount of gratitude every single day for the time I have. I think we should all have a “BUCKET LIST”, not because we think we think we are going to die, but because it makes you realize what is important.

LOVE, Walks and girls