My name is Michele Leightman and when I think about my grandchildren, I smile
from ear to ear. One of my precious granddaughters, Josiln (Josie) was
born in June, 2002. When Josi was
diagnosed a month after her birth with Prader-Willi syndrome, my world, and the
world of the people I love, shook. There were so many questions, so many
emotions. I began talking to the wonderful staff and volunteers involved with
the national office of the Prader-Willi Syndrome Association and there I found
badly needed support and information. After time passed, I realized that I was
not the only grandparent in need of sharing my thoughts and feelings with others
who were walking in shoes similar to mine. I am now a volunteer myself,
coordinating a Grandparent Support/Mentor Program specifically designed for
people with grandchildren between the ages of birth and toddler years who have
been newly diagnosed with PWS. The Association has much to offer. We look
forward to having all of you join us in our united effort to give strength and
hope to our children, grandchildren, and each other.
For information about the Grandparent Mentor/Support Program and other
programs, activities, literature, and support services, and ways in which you,
too, can become involved, please contact our National office:
Prader-Willi Syndrome Association (USA)
8588 Potter Park Drive, Suite 500
Sarasota, Florida 34238
Toll Free: 1-800 926-4797
My Name is Maureen O’Neil and I
am the grandmother of 5 grandchildren. My twin granddaughters are identical
twins so they both have PWS. They will be 8 years old in November. We spend
many week-ends giving help and support with the girls and their 9 year old
brother. We attend and support the girls when they participate in extra
activities in school or a special sports program. I have gone to the past two
National Conventions and some local ones as well. I am trying to gain incite
into what their futures could hold for them and how we could help then achieve
the highest level. I have listened and learned about this syndrome at meetings
as well as donating my time helping in any way possible.
I am now getting involved in the
grandparent’s web site. I think this will help any grandparent who has
questions or just need support. I have attended the Grandparent’s Sharing
Sessions at the last two annual conferences where I met other grandparents.
I feel by getting involved I will
learn about PWS and how I can help my granddaughters. I do know that the love
they give makes all the work worthwhile.
Please see the Home Page for more information about the upcoming Conference.