Re: What A Conference!!!

[Guest guest]

This was our first conference and there is no way to describe our feelings

about it. The information presented and the resources we can now look to

was beneficial--just wonderful!! We understand our daughter more now and we

are empowered with information to ASSIST the Doctors and Educators who deal

with Patty. Because she was recently diagnosed, we have always felt alone

and searching for answers. We now feel part of a family, a special family.

Everyone from Brownie, n the Presentors, Specialists who attended and

Families.....were wonderful. I am thankful we got the chance to attend! Not

only did my husband and I benefit from the conference, but so did my

children!!! My older daughter understands her sister more now also. Patty

(CHARGE) feels she is no longer " different " from the rest of the world. She

made some wonderful friends. She even wants to learn sign language, which we

have been trying to get her to do for a year now because of her progressive

loss. Only by meeting her new friends does she want to have this type of

communication. I just wish the rest of my extended family could have

attended. I too was a little depressed when we got home. We are now back

where we have to fight to keep our daughter in the same world as the rest of

society, being accepted only as Patty and not a label. But now we have

someoneto turn to. We met so many wonderful people and we hope to keep in

contact with everyone. We look forward to the next confrence. We thank

everyone we met. You all have changed our lives, forever.

By the way, has anyone had surgery for Sprengles? Her shoulder blade is

rotated and is progressing more where her function is now involved. They

will take the blade off and rotate back. Has anyone heard of this?