Sam. Conqueror. Overcomer.

On the 15th May 2009, Samuel Christian made his way into this world...two month's premature and in severe respiratory distress. Within hours, Sam was diagnosed with Rubinstein-Taybi Syndrome - a very rare congenital disorder, of which little was known. The diagnosis together with the immediate challenges Sam faced to thrive became our core focus and it was with joy and thankfulness that we eventually brought Sam home, after nine weeks in the NICU.

As time pressed on, it became obvious that Sam's development was falling behind that of his RTS peers. Shortly before his 5th birthday Sam underwent a brain scan and it was confirmed by a paediatric neurologist that in addition to Rubinstein-Taybi Syndrome, Sam also has Cerebral Palsy related to his premature birth, as well as Autism.

This blog chronicles our journey through these challenges...
Our world has crashed, been blown apart.
This can't be happening....why us? Why now?
Your fragile life shaken before it could barely start,
How do we get through this...please, Lord, tell us how?

Drowning in our sorrow, waiting for answers that just don't come.
Our baby "special needs"? It simply can't be true!
The heartache overwhelms us, we're left feeling cold and numb.
The diagnosis tells us little - these children are so few.

But then we finallyget to touch you, to see your precious face
And all the heartache and questions fade, replaced with love and pride.
It's obvious from the very start you're showered in God's grace,
And with His love and guidance, we'll take this challenge in stride.

When once we couldn't pronounce it, Rubinstein-Taybi's become our norm.
When once the future seemed dark, we now welcome the journey as having an RTS angel brings lessons in unexpected form.

Our world has crashed, been blown apart!
This IS us.....right now!
We've been blessed with a gift, so precious from the very start. How do we get through this? Here's how.....
By believing in a God, so merciful and great,
By trusting that He's right beside us as we journey through the narrow gate.
By believing His love for us is not determined by a human frame,
By trusting that we draw Him near by merely calling His name. This precious baby we asked God for,
Prayed he'd be perfect and complete.
And, as Samuel means "God hears", He's laid His answer at our feet.

(Nicky de Beer : 27/05/2010)

Friday, September 16, 2011

Ride for Rubinstein-Taybi Syndrome

Well, it's confirmed...Chris and I have entered to ride in the Cape Argus Pick 'n Pay Cycle Tour being held on 11 March 2012. We would desperately love to be able to ride as a Charity Bond for RTS, which would mean we'd be featured on the official website and be able to purchase a stand at the Expo at a special rate, all in the hope of raising a greater awareness of Rubinstein-Taybi Syndrome in South Africa.

The only slight drawback is that to enter as part of a Charity Bond you pay a R500.00 registration fee, as opposed to the normal R300.00 but there are a number of advantages of riding in the Bond, well worth the extra R200.00 in my opinion, being :

  • A start time of no later than 08:45am (great news for "new riders" and especially for me as a first-time rider, as the latest starting time is 10:00am)
  • A "special" goody bag
  • A special area at registration for collection of race packs
  •  The opportunity to support a good cause
In order to be able to ride as a Bond, we need to have confirmed a minimum of ten riders by 30th September 2011 and (at R500.00 per rider) be able to pay the R5,000.00 by that time as well. Thereafter, we have until 15 January 2012 to add riders to our Bond.

Yes, the thought of cycling 110km's is pretty daunting for some (or just plain scary for me), but the modus operandi from my side is to simply have heaps of fun, to get caught up in the excitement and anticipation of "getting ready" before the time...enough to actually make the 110km's within the allocated time...and of course doing all this while knowing I am doing something for my precious little smurf. So you need not be a veteran or even half-serious cyclist to join us. And to give you an idea of how challenging this is going to be for took me half an hour to cycle 5km's on Wed! Yikes! Oh please let me finish in less than eleven hours :)

So come on, folks, we need to find just eight riders in fourteen days (Gee, that sounded a lot simpler in my head). For further details, email me at

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