Darren Paul JohnsonHomepage (Cockayne-Syndrome.org)

T  9.3.1986   -   V  12.16.2002



Daddy and Darren.jpg (204623 bytes)    Mommy and Darren.jpg (1097261 bytes)



A friend is a person who lifts you up when you are down,

Who makes life fun when they’re around

Whose memories dance in around your brain

And never fades from time constraints

There are special times when you need to smile,

Or times when you need reminders

Of what is important in life

And you turn to look at a friend and just their presence

Tells you what’s important in life


Yes a friend is important, but consider a son is closer than a friend

A son is who you try to build a future with together

The sad thing is, sometimes your plans in mid-stream

Because an enemy of mankind, death gets in the way

And throws your life in turmoil and disarray


Yet it’s memories of our son that I know will help me cope

With the pain and suffering that hurts so much

I reflect on his life, and see what a happy child he was

And the man he could have become

Oh the memories…


I can still see him laughing and playing inside my head

And telling me vivid stories of things I remember

For hours we share those memories where no one else intrudes

Where we can be together in blissful solitude

And reflect together on the time in the future


Yet in the future, there is one thing I can hold onto,

And that is when Jehovah our God will make his promise come true,

A promise that a paradise earth of beauty is coming

Where there is no more Cockayne Syndrome and death will release its hold

On ones we all hold so dear… yes, our little Darren Paul will live again

A promise that includes the blind seeing and the deaf will hearing

And pain will be a thing of the past, for all of our little butterflies

Where a paradise earth will be provided for children will grow to their full potential

Where once again we all will be able to laugh and play for real


So we try not to be sad, because this is a sure hope for our family.

This is what Darren looked forward to, what our family hopes for.

For we know that this is an opportunity all CS families can have. SOON.


Love Darren.jpg (438591 bytes)  Telephone.jpg (394336 bytes)  Young Darren.jpg (402806 bytes)  


OvalDarrenChair.gif (1810277 bytes)


  Visit the Garden where our Butterflies flye 


     Butterfly-Tree in Martin's mother's garden