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mom2cris
April 2nd, 2004, 05:12 PM
We just recieved a call from Make a wish. And they denied Cristian because he needs to have at least a 2 yr old verbal skills or older he doesn't have that. I don't thinkthat was fair. I know he would enjoy going to Disney and he can't say that, but he could express it with his face!! She did give me a number for other programs, but I got upset and didn't even pay any attention. I thought for sure he would get a wish granted and I didn't think he would get denied. I only applied because it was post from other parents and he just got denied. That was a quick response.

Nilda and Cristian

Sheila George
April 2nd, 2004, 05:26 PM
Nilda,

The same thing happened to us at first. If you need to, tell them to contact the Texas Gulf Coast Chapter of MAW and tell them to ask about Shelby George who also has Sanfilippo Syndrome. I had to contact Barbara Wedehase at the MPS Society and she contacted the national MAW office and they in turn contacted our local chapter and they reversed their decision to deny our wish for Shelby and they sent us to Disney. Don't give up. I know it does not seem fair to have to fight for even this, and I felt the same way at first. But I put that aside and stuck in there and got them to grant the wish we requested for Shelby. They even tried to make the wish something small and not give us a trip to Disney but again I stuck in there and we got the trip to Disney.

Sharon Cochenour
April 3rd, 2004, 11:00 AM
Nilda
Sorry to hear about your denial :( , but do listen to Shelia and don't give up. There are several non-verbal children, including my own who have been granted their wishes. It doesn't seem fair that we have to continue to fight for our children, but the fight will pay off in the end. :smirk:
Sharon

The Rea Family
April 3rd, 2004, 12:35 PM
Nilda,
I'm sorry that Cristian was denied.
I hope you keep trying.

Laura Brodie
April 3rd, 2004, 01:38 PM
Sorry but this seems mad to me! and sick making :mad: Keep trying don't let them grind you down :8): Love Laura
Hey just thought of something
MAW = MAD ABOUT A WISH!!! :lol:

Priscilla Raftery
April 3rd, 2004, 09:58 PM
Joey got his Make-A-Wish trip,too, and he was non-verbal. The woman brought along a Disney music video and could tell by Joey's reaction how much he enjoyed it! KEEP TRYING!!!! Priscilla