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THE FIRST YEAR

11 August 2003.
Every journey in life starts with a single step. Today I took that step.

I’ve had MS since June 1999. In 2000 the words STEM CELLS came to my ears. I spent two years trying to find out about stem cells. My search was never really fruitful and some of the available info wasn’t encouraging. Then on the 7th August 2003 the information literally fell in to my lap. I could not believe what I read. Two days later I sent a probative e-mail and the wheels began to turn.
My Doctor, Beth has been with me since the start of my journey and I couldn’t have asked for a better partner, we both felt that this was the way to go.
After that first e-mail, Laura came in to my life and we fast became good friends. Between Beth, Laura and myself we arranged to ship the stem cells out closer to South Africa. By mid November we were all set, every thing was in place and all I had to do was transfer funds to the US. With in a week I would have the stem cell therapy. What a Christmas present for Ross I don’t know who was more excited, Ross or me.
I allowed a couple of days for the funds to clear and then phoned Laura. You know the sinking feeling you get in your gut when some thing is wrong. I got it. I couldn’t get hold of Laura; in fact I couldn’t get hold of anyone. Now it’s a mad scramble to find answers. Two days later I had them; the Food and Drug Administration in the US had closed the company down and seized every thing. Records, assets, funds, every last thing. We won’t talk about getting P’eed off.
It took two months before I eventually got hold of Laura. I calmly listened to her side of the story, put it together with that of the FDA, and then read between the lines. The long and the short of it? This is my own personal feeling. It’s frightening when one man at the top of the chain doesn’t like something, and goes and puts a large spanner in the works. I just hope that he never has to seek the same resource that he basically outlawed.
February 2004
I was now caught in a difficult situation, I still want this treatment but a large portion of my money is on ice in the USA. The company that Glynn works for came to my rescue. Selborne hotel, spa and golf estate arranged a benefit golf day on my behalf.

Dear Selborne Member, Tuesday 27th January 2004

Re: The “SHAWN RASPER GOLF DAY” Friday 20th February

You may all be wondering who Shawn Rasper is! I think I am correct in saying this is the first time in the history of the Selborne Golf Club that we are involving ourselves in a golf day such as this one that does not directly benefit the Club. It is certainly the first time that I, as President, am asking members to participate and involve themselves in a worthy cause. This tragic story is really “close to my heart” and to many of us here at Selborne.

Shawn Rasper was previously the Maintenance Manager at Selborne in the days of Southern Sun. He has “Multiple Sclerosis”, first diagnosed 5 years ago, just after the birth of his first and only child, Ross. Shawn is married to Glynn, Selborne’s Human Resources Manager (handling all staff & union related issues for the club, hotel and body corporate) as well as the Marketing PA for Brad Cartwright.

For those of you who don’t know, and I certainly had no idea of its severity, MS is a life threatening, very debilitating disease, with no known remedy. Shawn is deteriorating every day. His only life-line is Glynn, who now is not only responsible for their financial income, but also for running their home, being a nurse, Mom, wife and friend to Shawn - from getting him out of bed each morning (a task that takes no less than 30 minutes) to keeping him motivated enough to face the everyday challenges of his life.

Many of you may already have heard about the exciting medical breakthrough recently shown on Carte Blanche for MS sufferers, called “stem-cell treatment”. This “medication” is still in the research stage, but has had startling and very positive results worldwide. Consequently, Glynn after nearly a year of struggle, managed to raise the funds through a bond, to cover the R120 000 required at that stage to get the stem cell treatment for Shawn. The money was duly sent to America, and Glynn and Shawn waited eagerly for the stem cell treatment to arrive. Suddenly, the FDA (Food & Drug Administration) called them… The company to which the money had been forwarded was under investigation because no one is apparently allowed to charge for medical “research”, which is what this company had been doing to a number of patients. The company’s bank accounts have been frozen and the Rasper’s were advised by the FDA that only after the outcome of the court cases, could they advise if or when a refund would be forthcoming. In the meantime, no stem cells are available to Shawn – which he so desperately needs – and now Glynn cannot afford to get them overseas for the stem cell treatment.

As if this isn’t all enough, very few people are aware of the fact that Glynn too, has serious problems of her own – she had surgery last year to remove very large cancerous growths, at present, her cancer is “in remission”. Without question, all of us who know Glynn believe her to be a truly remarkable woman. You will never see Glynn without a smile and you will never hear her complain. She is a blessing to not only Shawn and Ross, but to all of us who work with her. These wonderful folk are really in serious trouble. It was the Selborne Staff and Managers who decided to put together the Selborne Golf Day, not me, in order to try to help them in whatever way we could. Darren Scott of East Coast Radio and a variety of other media personalities will also be getting involved in promoting the golf day and asking for donations to be made to the benefit account (details below)

But “charity begins at home”… I am appealing to you all as Members and Friends to please support this worthy cause. If you cannot play, then please donate something – anything. I KNOW how much it will mean to both Shawn and Glynn. I thank you most sincerely in advance for your support. It will be most appreciated.

Kind regards,
Denis Barker
Honorary Life President
Selborne Country Club

Golf day speech 20 February 2004
Ladies, Gentlemen and Friends,

Almost four months ago, Glynn came home and advised me that certain Club members and Selborne staff were planning a benefit golf day for me. At the time I felt somewhat overwhelmed by this kind gesture, however this was merely the starting point of what eventually became a day in my life that I will never forget. So often one hears people say “it’s for a good cause”, it’s only when one becomes that “good cause” that the word (THANKS) seems somewhat insignificant, it is simply not strong enough.

Since being diagnosed with “Multiple Sclerosis” some five years ago, my life changed overnight – my goals and ambitions were shattered, so were the goals and ambitions of my family. Glynn became the breadwinner, Mom and nurse overnight, however this drastic change brought us closer together and allowed us the opportunity to value the little things in life that so many overlook. One lesson I have learnt is that for every negative, there is a positive – one just has to find it. My ambition in life is to be able to play cricket with my son – at the moment I cannot do that, however, I spend every afternoon with Ross – quality time that most Dads cannot afford due to work constraints – so I am lucky after all! My intention is to pursue every avenue open to me in the struggle against MS, and I truly believe that one day a cure will be found, which will benefit all, I will not give up! In a recent news report on 17th Feb, Duke University in the US has just released findings on stem cell treatment, they have proved that it works, thanks to everyone here today, the opportunity for me to obtain this treatment is now in sight.

I have so many people to thank tonight that quite frankly I’m battling to find a starting point, there were so many people working behind the scenes - that I cannot possibly name them all, however a Special thanks to Brad and Denise Cartwright, Yvonne Renwick, Clint Hillhouse, Mark Renwick and to Denis Barker – you sir, are a true gentleman, thank you. To the staff of Selborne, I thank you for the time and effort from the planning stage through to completion of this special day. To all the sponsors, to those who donated the most amazing prizes and to the players of the day, you have ALL contributed towards the most memorable day of my life.

Wishing you all good health and a safe journey home!!
Thank you.

Some two weeks later, upon checking the benefit account, I found that I could renegotiate for stem cell therapy. This time round, I wasn’t about to put money up front. This time it wasn’t my money and I wasn’t about to lose it.
For the next 5 months, it was a case of stop and start the whole time. Just as everything was in place, something would crop up and put a spanner in the works. I had some serious highs and lows during this time, which didn’t help my MS. Then to top it all, my diagnosis was changed from relapsing/remitting MS to rapid progressive MS. Everything came crashing down, my motivation, my health, my sense of humour all just disappeared and left me stranded. Walking was no longer an option for me, just standing up was an effort. I had pain most days and I was living on drugs and I was rarely lucid. Both Glynn and Beth kept my sanity in check and I have no idea how many times I rambled off to either of them. I was left with my one and only goal to focus on and that was my treatment. Some how I managed it.
The last week of August 2004, everything was in place; my day to regain my life was in sight. Unbeknown to me, I was about to step right back into the drivers’ seat and take charge within hours of the injection.

SEPTEMBER 2004
WEEK ONE

01 September 2004
Yesterday was a day from I don’t know where. I spent the day trying to chill out and letting time march on just waiting for 2 o’clock. Then came the call, there was a delay in the shipment. That just screwed my stomach up.
Just on 4pm I arrived at the clinic, and there it was. A cooler box that could probably fit a dozen beers inside. So I’m sitting there thinking that it must be quite a large amount of stem cells. What an anticlimax when the box was opened. Right at the bottom was this small phial with about 1.5ml of fluid in it. It just goes to show that size doesn’t count.
By 5 o’clock it’s all over, no pain but hopefully lots of gain. I cannot describe how I felt. Thirteen months of stop-go, stop-go and 15 minutes of treatment. I still can’t believe that it has happened. I think that maybe Beth feels something similar, there have been times that we were ready to chuck the whole thing in, but we egged each other on. Glynn has backed us up the whole way and there have been a couple of times that she has wanted to go overseas to shake a few heads. Ross has also been a major player with the simple words, “Dad when are you going to have your injection so you can walk again”?
Here’s a Ripley’s for you. A little over two hours after the treatment, I stood up out of my wheelchair unaided, I didn’t wobble and didn’t have to grab on to anything. I haven’t done that for months. Glynn just looked at me and told me not to push my luck. I did it again this morning, and the big beaming smile from Ross said it all.
BELIEVE IT, OR NOT.

02 September 2004
I’ve got to go back 36Hrs to explain this. When I climbed in to bed after my treatment, I did so without any medication. That being, no sleeping pill or muscle relaxants. My system is so used to a sleeping pill that I drifted in and out of sleep. I think I spent more time awake than anything else. Then my leg muscles decided to come to the party, “Hey boys, lets see how tight we can get”! I can’t get them that hard when I tense up, I have no muscle tone left, but left to themselves they do their own thing. It’s no fun, it’s bloody painful. In between all of this, as I’m trying to relax, I’ve got different muscle groups letting me know that they are around. It’s like when you get a nervous tic in your cheek, the muscle jumps uncontrollably. Well, I had a leg jump twice, then a short while later my wrist, a little later my elbow. So through the night and most of yesterday I was like a jack-in-the-box, it wasn’t painful, just weird.
Late yesterday I found out that this is a good sign, it means that messages are getting through my nervous system.
Through out the day yesterday I was continuously pushing my chair back from the computer and standing up and stretching. You have no idea what a great feeling that is, especially when you haven’t done it for so long. I have to keep reminding myself not to push things too much.
By the end of yesterday I was tired and I was dreading going to bed, I was expecting to have a rough night. My thoughts were generally unfounded, I slept most of the night and my muscles didn’t wreak that much havoc. I also found that I could move around in bed a lot more easily than normal, so something is definitely happening. When I woke up this morning I had this feeling that something was different and I had to take stock of my body. Then it hit me, my hands weren’t tingling, I could rub my fingers together and actually feel the tips, after almost five years, it’s an alien sensation to me. Of course after a few minutes of getting dressed the tingling came back, but I’m getting feeling back into my hands even if only for a few minutes. I stood up after getting dressed and just stood at the window for a good minute, no wobbling, no holding on to the bars, what a feeling!
We will see what today brings.