Friends,
Every day there seems to be more to be thankful for in terms of hope
for our children. Theresa's posts about new possibilities always
thrill me. Knowing that people who have expertise in various
specialties are uncovering new information that could lead to new
treatment options for our kids really comforts me. Even those who
are not looking specifically at PWS, like the prostate cancer
research she posted about earlier this week, have the potential to
benefit the world of PWS. All of this works together to increase
the chances of our children living healthy, fulfilled lives. That's
really what we want, isn't it? We want our children to live the
lives they should have had without the diagnosis of PWS. We want
them to be free to make choices, even mistakes, as both are part of
what it means to live as a truly independent human being.

Even now, with Erin being only 10, I can't help but look ahead and
wonder what life holds for her. These first ten years have been
incredible, days full of challenge and a decade full of overcoming
challenges. How different things would have been, though, if we had
just passively waited for PWS to do its thing. If we listened to
the doctors when they said that there was nothing we could do, the
probable outcome is terrifying. Looking at her now, after 10 years,
I can say that all the therapy, all the doctors, all the
intervention, even all the worry, has been worth it. I'd choose
exhaustion over despair any day. 🙂

I can't imagine how differently Erin's future might look if we had
also listened to those who said that there was nothing we could do
to influence the quality and quantity of research being done on
PWS. If we had just remained passive, hoping that someone somewhere
would do something, then the 12 studies that we have sponsored would
yet be undone. The top medical journals that have published our
work would have published someone else's findings about something
else. Thousands of people who have participated in our collective
events would still be unaware of PWS and the danger it presents to
our children. All this, just because we had chosen to do nothing.

But we didn't, did we? Those of us in FPWR are the kind of people
who need to be personally involved, who need to get our hands dirty
working toward the answers we need. We need to know that we are
doing everything we can to make our children's lives better NOW.
Our children don't have time for us to wait patiently for someone
somewhere to act. They don't have time for us to hope that others
take the lead. And they don't have time for us to get stuck in
worry when we should be out there working. As much as I wish it
were different, as much as I wish there were an easier way, I just
don't see it.

We know what is possible when we have the money to support
research. Scientists COME TO US with ideas, possibilities to create
a new future for our children. A NEW FUTURE! None of us have any
guarantees when it comes to our children, especially when you factor
in PWS. The only guarantee comes when we take the path of least
resistance, throw our hands up in the air, and let nature take its
course. This is one of the cases where nature, potentially
beautiful and awe-inspiring, has fallen down on the job and left our
children holding the bag. Fortunately, in God's infinite wisdom, we
are all designed for wholeness and we will keep looking for the keys
to that wholeness until we find what we need.

Health, happiness and the freedom to make choices are the prime
components of an independent future and that is our ultimate goal
for our children–independence. As history has shown, gaining
independence often involves struggle and ours is no exception.
Let's commit ourselves anew to doing everything we can to clear the
path for our children's independence. Nothing is more important
than this. When we succeed, we will have made life better for our
children w/PWS, their siblings, and ourselves. We will have changed
history–all part of a day's work for those of us in FPWR. 🙂

We know we can make a difference. In the beginning, we hoped we
could, but now we KNOW we can. We just have to keep on doing the
things that we have been doing so well, and add to that the type of
fundraising techniques that can take us to the next level. So, our
job now is to keep thinking of ways to reach out to our business and
social contacts, to our friends and family, to anyone who is in a
position to help us. We look forward to the day when we no longer
have to ask for help, to the day when we can wish a fond farewell to
concerns stemming from PWS, to the day when our children's futures
are secure–to nothing less than our children's independence.

Keep your mind sharp, your head up high, and your hands busy.
Together we are doing great things for our children and for families
everywhere dealing with PWS!

Rachel

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