Emily’s wish was declined

    • Anonymous
      March 31, 2008 at 4:31 pm

      Apparently her dr didn’t say that CIDP is progressive or degenerative. Which it IS if it isn’t treated.

      I’m appealing it. I gave them the number for her neuro (I had them contact her pediatrician before) and I just called to leave a message for the pediatrician to call me back so I can talk to him. I also called the neuro & told them to watch for any paper work that might come through & to call me if it does.

      I’m so upset.

      And of course I feel like such a tool for making a big deal & appealing something that is free.

      I haven’t even told Emily. I don’t have the heart to.

      Kelly (heartbroken)

    • March 31, 2008 at 5:47 pm

      Kelly,
      I am so sorry! I am sure the appeal will go just fine. I think Mason got it, Jessica Louise when she was younger, Kevie, Emily is not any different! The neuro will set things right! Don’t tell Emily anything until after the appeal, it is not like you are lying to her, you ARE awaiting an answer. how could the pediatrician so STUPID!!!!
      Dawn

    • March 31, 2008 at 5:47 pm

      Kelly,
      I am so sorry! I am sure the appeal will go just fine. I think Mason got it, Jessica Louise when she was younger, Kevie, Emily is not any different! The neuro will set things right! Don’t tell Emily anything until after the appeal, it is not like you are lying to her, you ARE awaiting an answer. how could the pediatrician so STUPID!!!!
      Dawn

    • March 31, 2008 at 6:07 pm

      Kevin said he wants to give his wish to Emily. They have this packet to fill out and a section says “What I want” He said he is going to write for Emily to get her wish.
      Dawn

    • Anonymous
      March 31, 2008 at 6:38 pm

      Yes, Mason and the family went to Disney in Orlando. They flew them there.

      I can’t believe she won’t get it. I’m sure everything will be fine.

      Love, Lori

    • Anonymous
      March 31, 2008 at 7:58 pm

      Dawn –

      Kevin is too sweet but he deserves his wish too.

      Kelly

    • Anonymous
      March 31, 2008 at 8:00 pm

      Lori – what I don’t get is that Mason & Kevin both were granted wishes through Make A Wish & Jessica Louise was granted a wish years ago from another organization.

      I told the lady that I know of a child with CIDP who was granted a wish 1 month ago & it’s utterly ridiculous that Emily was denied. She’s supposed to call her pediatrician back & talk to him. Hopefully he’ll return my call before speaking with Make A Wish so I can set him straight.

      It just doesn’t seem right that some kids will get their wishes & Emily won’t just because of the wording that the dr did or did not use.

      And I was told today that if her wish is granted it will take over A YEAR for her to get her wish because they are so backed up.

      Kelly

    • Anonymous
      April 1, 2008 at 1:01 am

      Kelly-

      I just wanted to let you know that their is an organization in Michigan that granted my wish called The Rainbow Connection. They do not just grant for terminally ill, they also grant for chronically ill kids. They have been doing wishes for chronically ill since they began. My wish was granted almost immediately! Maybe you should give them a try.

    • Anonymous
      April 1, 2008 at 7:26 am

      Kelly, I’ll keep my fingers crossed that everything works out. Dont give up !

      Stacey

    • Anonymous
      April 1, 2008 at 11:11 am

      Thanks for the info Jessica! If Make A Wish doesn’t work out then that is who I’ll call.

      Stacey – Thanks! We’ve got our fingers crossed too.

      Kelly

    • Anonymous
      April 2, 2008 at 3:35 am

      Dawn, Kevie is so amazingly sweet! You have done a great job with him, obviously. You must be very proud of his empathy and kindness.

      And Kelly, that’s just nuts. I hope this gets sorted out soon! This has got to be just a mix-up! Good luck.

    • Anonymous
      April 2, 2008 at 4:04 am

      Make-A-Wish is an independent organization from chapter to chapter, which is usually from state to state. Each one has their own way of accomplishing the same thing. As you can well imagine, they have to have guidelines for granting wishes and their greatest desire is to grant a wish to each child in need. One of the hoops to be jumped thru is what the primary care doctor has to say and what he/she backs it up with. It is no longer true that the diagnosis must be impending death but the disease must be considered life-threatening. Some chapters have more wishes asked for than others (population) so it can take a long time to be able to grant the wish. And of course, the child who is dying needs to have the wish granted before a child who is chronically ill. You can’t imagine all that goes into granting a wish ~ starting with the doctors, minister, social worker etc and then with finding out if the wish being discussed is really what the [I]child [/I]wants. Believe me, wish granters are well aware of the needs of each precious child and their family. They truly are doing the best they can and many times beyond. And each child stays in your heart for the rest of your life . . .

      I am a former Wish Granter for the Oregon Chapter of the Make-A-Wish Foundation.

    • Anonymous
      April 2, 2008 at 9:46 am

      Judi – I really want to be a wish granter. I want to go to kid’s homes & help make their wishes come true. I keep promising myself that when I have more time it’s something I’m going to look into doing.

      Honestly though, I think this woman from Make A Wish just isn’t very good or something. When I talked to her the 1st time she asked me for Emi’s primary dr’s name & number. I’m thinking the primary dr is her pediatrician and the neurologist is her specialist. Isn’t that the normal lingo?

      After I gave her that info, she said that was all she needed & she would contact him. I told her that I gave her the pediatrician’s number because that’s what I thought she wanted when asking for her “primary dr” but that she might want to call the neurologist because he’s the one that treats her CIDP & knows more about it. I specifically told her that the pediatrician doesn’t know that much about CIDP, other than what I’ve told him.

      She said it was ok & she’d talk with the pediatrician & if needed she’d call back for the neuro’s info. I thought, Ok fine. I’m not familiar with the process so I thought it was normal.

      When she got the denial from the pediatrician she didn’t think that she should call the neuro or even contact me. Even when I talked to her the other day she was still reluctant to talk to the neuro & wanted to keep going through the pediatrician. The pediatrician isn’t the one who is treating her illness & I don’t understand why she won’t listen to me & talk to the dr who is.

      That’s why I’m frustrated. The pediatrician isn’t familiar with having to fill out papers from Make A Wish, I’m sure. He’s never had a kid with CIDP before. He doesn’t know the first thing about it. He & I have had many talks about that. Even when I told the Make A Wish lady this she still insisted that she deal with him.

      I realize that the organization is backed up & that there are MANY, MANY, MANY kids who need their wishes granted before Emily. I get that. I just don’t get why this lady won’t listen to me & contact the right dr.

      Ok, I gotta stop talking about this before I get upset again.

      Kelly

      Kelly

    • Anonymous
      April 2, 2008 at 11:15 am

      have you considered speaking with her supervisor? I believe I would try that and get a note from Neuro. Maybe seeing it in writing it would sink in.
      Best of luck.

    • Anonymous
      April 2, 2008 at 12:09 pm

      Kelly ~ I truly am sorry for the rough start with The Wish 🙁 The neurologist does not have to wait for Make-A-Wish to contact him ~ he can “refer” Emily’s case to them. Any doctor, pastor, social worker can do that. Also, your feelings should have been taken into account ~ that’s part of the professionalism we learn. I will not make excuses/give reasons for this individual. Sometimes speaking with the supervisor makes for a healthy change for everyone involved.

      Working for Make-A-Wish really tugs at the heart strings! but oh, it’s so rewarding 😀