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Strong Enough To Fight

Posted by Keegan JohnsonNovember 26, 2010 at 6:21pmNo Comments

Earlier today I was emailed from a father in Italy with a new son (3 weeks old) with Prader Willi Syndrome.  He wrote a great email (even though English is his second language).  In the email he wrote a sentence that really resonated with me.  He said,

“We are quite upset by this syndrome, but we are strong enough to fight!”

Wow!  I was blown away.  What a great way to sum up the feelings we go through as parents of a child with PWS.  We all know that the day to day challenges can be crushing, such as:

  • Getting the diagnosis,
  • Countless hours seeing specialists or in therapy,
  • Sleepless nights listening to hear if my son has woke up and wandered into the kitchen,
  • Getting a call from my son’s school about the latest ‘behaviour’ issue, or
  • Watching my son struggle to learn what comes so easily to everyone else.

Each day we are faced with a single question, “Are you Strong Enough To Fight?”

Each day we:

  • Avert a potential meltdown by completely adjusting our schedule,
  • Run a fundraiser to raise money for PWS research, or
  • Simply get up and get through the day,

We answer that question, YES!

I am continually amazed and encouraged by the strength of the PWS.  I know with that strength we will eliminate the challenges of Prader-Willi Syndrome and I cannot think of a better way to express the feelings of our entire community then

“We are quite upset by this syndrome, but we are strong enough to fight!”

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