Facing the unknown can be scary, and learning your child has a rare genetic disease is certainly venturing into the unknown, but educating yourself will empower you to make the best decisions for your child. PWCF is here to help you through this new journey. This website is one of many tools at your disposal. We encourage you to explore the website, come to a support group meeting or other event so you can meet other families and become a member so you’ll always have latest information.
On the right is a poem widely circulated in the special needs community that helps put some perspective on this unexpected life path.
You’ve already taken the first step in coming to this website to educate yourself. Here are some other things you’ll want to do as you begin the process of managing PWS:
1) Get Information; explore the Parents section of this website, especially the section for the age of your child. Also call our office or complete the online form to request a PWCF Information Packet and contact PWSA to request their Package of Hope.
2) Connect with other parents; call our office and we will put you in touch with the parent of a child similar in age to your child or request a parent mentor from PWSA. It can be very helpful to speak to someone who knows what you’re feeling and experiencing.
You should join the one based on the age of your child. These support groups provide valuable information and support from parents around the world.
3) Contact Regional Center; Regional Centers provide various therapies and support services to individuals with developmental disabilities. See our section on getting services.
4) Start appropriate therapies: Individuals with Prader-Willi syndrome require various therapies including occupational therapy, physical therapy, speech therapy, social skills therapy, infant stimulation, etc. Therapy needs vary based on the individual and may change throughout the individual’s life. See our section on therapies.
5) Research Growth Hormone Therapy: growth hormone is not a cure for Prader-Willi syndrome, but it is a treatment option to help manage the syndrome. See our section on growth hormone therapy for more information.
6) Find an Endocrinologist and discuss beginning growth hormone therapy. Prader-Willi syndrome is primarily a disorder of the hypothalamus therefore an Endocrinologist is the appropriate specialist to monitor your child and to prescribe growth hormone. Endocrine Providers Referral List
PWCF maintains online and in-person Support Groups for parents and professionals.
PWSA (USA) maintains several Facebook support groups.
Welcome to Holland
by Emily Perl Kingsley
I am often asked to describe the experience of raising a child with a disability – to try to help people who have not shared that unique experience to understand it, to imagine how it would feel. It’s like this……
When you’re going to have a baby, it’s like planning a fabulous vacation trip – to Italy. You buy a bunch of guide books and make your wonderful plans. The Coliseum. The Michelangelo David. The gondolas in Venice. You may learn some handy phrases in Italian. It’s all very exciting.
After months of eager anticipation, the day finally arrives. You pack your bags and off you go. Several hours later, the plane lands. The stewardess comes in and says, “Welcome to Holland.”
“Holland?!?” you say. “What do you mean Holland?? I signed up for Italy! I’m supposed to be in Italy. All my life I’ve dreamed of going to Italy.”
But there’s been a change in the flight plan. They’ve landed in Holland and there you must stay.
The important thing is that they haven’t taken you to a horrible, disgusting, filthy place, full of pestilence, famine and disease. It’s just a different place.
So you must go out and buy new guide books. And you must learn a whole new language. And you will meet a whole new group of people you would never have met.
It’s just a different place. It’s slower-paced than Italy, less flashy than Italy. But after you’ve been there for a while and you catch your breath, you look around…. and you begin to notice that Holland has windmills….and Holland has tulips. Holland even has Rembrandts.
But everyone you know is busy coming and going from Italy… and they’re all bragging about what a wonderful time they had there. And for the rest of your life, you will say “Yes, that’s where I was supposed to go. That’s what I had planned.”
And the pain of that will never, ever, ever, ever go away… because the loss of that dream is a very very significant loss.
But… if you spend your life mourning the fact that you didn’t get to Italy, you may never be free to enjoy the very special, the very lovely things … about Holland.