Strong Enough To Fight
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!”