Saturday, October 1, 2016

The Puzzle That Desperately Needs To Be Put Together

January 2, 2008 by  
Filed under NPC Family Stories

Puzzle

 With the permission of Sherry Richardson, a proud Mom of a beautiful boy named Ryan Richardson (5/27/00-10/18/05), I’ve posted a letter she wrote on what Niemann Pick Type C disease stole from her son Ryan and her heart. I pray to God every minute of everyday that this will not happen to Addi and Cassi and the other families who have children fighting NPC.  We need help to put the pieces of this puzzle together to find therapies and a cure for Niemann Pick Type C. 

A Mom’s Story About Her Beautiful Son Ryan

As I look back on the past five years, the common question that was asked of me was, "What is Niemann Pick Disease Type C"?  I have always answered the correct scientific way, but as a mother, I know what this disease really is.  It’s a missing piece of a puzzle that so many of us are searching for and would do anything to find.

NPC took the most beautiful sounding voice slowly away, only to be heard again in dreams.

His wonderful feet that wore all different types of shoes are only turned inward and a simple sock causes him pain.

His legs that were once strong can not longer bend and now one can only see bone.

His tummy has always been large, but now causes him harm that a simple deep breath is hard to do.

Those lovely hands that onced gripped mine are now curled up and a simple touch makes him cry.

His arms once held me but now they can no longer bend and picking him up is hard to do.

His beautiful lips that gave away kisses now are now intruded by suction tubes.

That beautiful mind that used to draw me pictures are now taken over by daily seizures.  I often wonder when they occur, where do you go and pray that it does not hurt you.

There is one thing this disease will not take away, his strength to live and his offering of love.  And still with all that he is going through, he still manages to smile which helps my broken heart.

So, what is Niemann Pick Type C disease?  A puzzle that desperately needs to be put together so no other soul on this earth has to go through such pain and no other family member needs to hopelessly watch their loved one slip away.

Sherry Richardson:  Proud Mommy of a boy who just happened to have NPC

Ryan Richardson
5/27/00-10/18/05

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