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acealotts
March 30th, 2004, 09:21 AM
Hi all!

It has been some time since I have last posted. Bailey ( MPS III A) just turned 6 years old last week. We had been waiting for a letter regarding Bailey's Wish. It came yesterday. We were denied due to the medical requirements. I guess that I do not understand why she was turned down. I was wondering if amyone has been to the Give Kids the World? Do they grant wishes too? I want to be able to give Bailey and our other children somethng special to remember while she is still able to enjoys things.

Anne

K Wehrle
March 30th, 2004, 01:54 PM
That's strange...I have a friend w/a daughter w/MPSIIIA & she was granted a wish through MAW. I might press a bit more - maybe the doctor who was corresponding w/MAW wasn't clear about the prognosis? Just seems like you should qualify.

Kristin

Priscilla Raftery
March 30th, 2004, 02:22 PM
Joey has MPS IIIB and he was granted a wish through Make A Wish. Something's wrong...Give Kids The World is where we stayed when our wish was granted through MAW. Medical requirements? I don't get it...I think you need to pursue this further. If you can give me more information I can contact our sponser and see what she can tell me. Let me know what I can do, this is not right! Priscilla

THEmps2mom
March 30th, 2004, 03:19 PM
NO this is not right! You definately need to pursue this further. I know a few families have had a difficult time getting their child's wish granted through MAW because the child is not able to "verbally" communicate their wish. I volunteer for our local MAW chapter and have discussed this very issue with them before. Many children (from around the country) with MPS III have had their wish granted for GKTW/Disney.

The Rea Family
March 30th, 2004, 04:35 PM
i agree with everyone else.
This is not right.
Pursue this further.
I hope that everything works out.
Keep us posted.

3coolkidsmom
March 30th, 2004, 10:12 PM
There are many other wish organizations that you could use. Go to the Give Kids The World web site and they have a link that lists every wish org. in every state. In Texas, many families choose a Wish With Wings instead of MAW for the same reason you have stated. However, I agree with everyone else. MAW, being the charitable organization that they strive to be, should be willing to investigate your family's situation further.

Sheila George
March 30th, 2004, 10:30 PM
Make a Wish originally denied Shelby's wish (MPS IIIA) because she could not verbalize her wish. I contacted Barbara Wedehase at the MPS Society and she contacted the national office of MAW and they in turn contacted my local chapter. All I know is I was told by Barbara to reapply and we did and her wish was granted.

I had a hard time at first pursuing it because it felt strange to me to have to fight for something for my child from a wish granting organization but I did and they came through.

Just keep trying!! It will work out.

Barbara Pryor
March 30th, 2004, 11:00 PM
Anne,
Sorry to hear about the denial letter. The organizations that I know of are Make A Wish and Special Wish. They are two different wish makers. Maybe you can contact Special Wish and they can help you. Hang in there. :)

rickys1mom
March 31st, 2004, 02:45 AM
The Brass Ring Society is another wish group. They even came and presented at one of the MPS conferences several years ago. Our Ricky, Sanfilippo A and now 25, had a Disney wish granted through Make a Wish back for the first MPS Disney conference. It was a very special trip for all of us. I was very surprised when I heard that Sanfilippo families were having problems getting wishes granted as ours had been approved without a hitch. Don't give up!
Anita

acealotts
March 31st, 2004, 08:40 AM
Thank you all for the input. I am going to call MAW today to ask why Bailey doesn't qualify. I had them go thru her dr at U of M, her genetic dr. I thought for sure we would get approved. So I will call today and have them explain it to me. I did tell them that she could not tell them verbally what she wanted to do. I will let you all know what I find out. Thank you for the other wish places that I can try too. I just want her to be able to enjoy the wish and have fun. I will keep you posted.

Anne

Sharon Cochenour
March 31st, 2004, 03:40 PM
Anne
please continue to press them for a reason for the denial. My son Andrew was non-verbal at our request, I invited them over and put in a disney tape. He jumped up and down clapping his hands and laughed. That was enough for them. You as her caregiver knows her better than anyone else, and know what she wants.
Sharon

Paulina Jump
April 1st, 2004, 10:00 AM
Anne, Andrew didn't tell them where he wanted to go. He has Sanfilippo B. We went last April, he had a blast. If there is anything i can do to help let me know.

Paulina

ChrisMPS2
April 2nd, 2004, 01:27 AM
I didn't know they had to be able to indicate their wish. I imagine some of the decision makers are very lenient and others will be sticklers for the rules. William isn't very responsive any more in that way. In fact Lou and I shudder when they show the woman in Florida in what they call a terminal vegetative state. She's the one that the husband is fighting to get her taken off her feeding tube. Put side by side, she actually looks more responsive than William. How dare that man try to take her off the feeding tube when she clearly enjoys her parent's visits. I heard that some people think the husband caused her brain damage!

Raines Family
April 3rd, 2004, 12:23 PM
Hello, We were also told at first NO,but then we got a real nice lady that helped us and then Caylin got her wish to also go to Disney World. We stayed at Give kids the World and the kids had a blast. Everyone there was so wonderful to us. Keep trying through Make A Wish. Caylin didn't say her wish either but she still got it. I guess it takes a real understanding person to understand what we go through. Hope you get to go! :)

PattyT
April 4th, 2004, 05:15 PM
Hi Anne,

Jesse is MPS III a also.. we got a Make a Wish trip in 2002 to Disney. But they did want Jesse to verbalize his wish.. I told them that he could not, but they cans ee his reactions to his disney tapes when we play them if they'd like.. he loves his Disney musical tapes.. he jumps and dances all around. Of course he does the same with Barney too.. but there wasn't a Barney World.. LOL!

So they did come out and watch him watch his tapes and it convinced them that he would enjoy Disney for sure.

So that was the selling point for them since he couldn't verbalize. Our Dr. (we referred them to our Geneticist, not our General MD) he also wrote a good letter of referral that Jesse is a prime candicate and that the sooner he went the better, due to the regression of MPS III.

I hope this helps you, but I would pursue it further. Medical conditions should not stop your trip to Disney at all. I saw kids at Give the kids the World, with G- tubes, oxygen, and wheel chair dependent at all times there. So medical should not be an issue I wouldn't think.

If you go to Give the Kids the World web site, they have an area about Granting Wishes and you click on your state and see what organizations in your area Grant wishes for them... here's the link
http://www.gktw.org/docs/how

Good Luck and I hope you get that Disney trip.. GTW is the best about taking care of your needs while you're there, it in itself is a place you can stay a week and enjoy, without even going to Disney.

Patty and Jesse

Deidra Hicks
April 7th, 2004, 08:54 AM
I am so sorry to hear this. I agree that you should reapply. Give Kids The World is the best place for medically challenged kids to stay. B.J. is on the machines at all times and many other kids were alot wqrse than him.



Deidra,