Tianni diagnosed with Prader-Willi Syndrome

[Guest guest]

Hello Everyone

First I want to thank all of you beautiful ISOP mommies who have helped me both

directly and indirectly with your words of wisdom and encouragement. With that

being said we just found out our daughter has Prader-Willi and I'm so lost right

now. What hurts me the most is knowing my child once she reaches a certain age

and through out the rest of her life will have to deal with the feeling of being

hungry all of the time. We are doing a lot of research so we can educate

ourselves as much as possible to give our daughter the best life possible. I'm

just a little sad knowing that my daughter will always be dependent and won't

beable to give me any grandchildren. I know there are worst things and people

work through them but we just found out and I'm working through my emotions. If

there are any moms who have children with Prader-Willi I would like to hear your

experiences in dealing with your kiddos. Also how did casting affect your

little ones.

On a higher note we have our first appointment with Dr. C in PA on Oct 5th

thanks Liami for your reccomendation. Thanks again ISOP you guys are the best!