2nd chance for Make A Wish denied!
AnonymousApril 24, 2008 at 8:46 pm
Just wanted to let you all know that Emily’s neurologist denied her for Make A Wish too (her pediatrician denied her last month). Apparently the “rules” say that a child has to have a “chronic, progressive or life threatening disease” and Emily doesn’t fit into that category because she’s stable right now. She’s not even in remission! And I know that kids with cancer get a wish even after they go into remission.
I guess it doesn’t matter that she’s ONLY stable because she’s on IVIG. I kind of argued with the receptionist at the neuro’s office today & said to her “So let’s stop her IVIG & see what happens. Will she qualify then?”. Yeah, not my greatest moment, I know.
I’m going to talk with Make A Wish again & ask that they clarify their rules for me.
I’m stressed, upset, mad, etc. It just doesn’t seem right that other kids with CIDP get a wish & Emily doesn’t. She’s been through SO much & had to get more IVIG than even adults get. I guess none of that means anything now.
If Make A Wish doesn’t pan out then I’m going to call the program that Jessica-Louise posted to me about. Hopefully that will go better for us.
So MOMS, listen up. If you ever plan on doing Make A Wish make sure you call them when things aren’t better. Call ASAP!
AnonymousApril 25, 2008 at 9:28 am
It’s confirmed! She does NOT qualify for a wish because she’s not in a relapse now. If the IVIG stops working for her then she’ll qualify again. 1 year ago she would have qualified but we waited to refer her until she was more stable.
I’m just devastated. It’s just not fair! There are other kids (and please no offense to their parents) that were never as bad as Emily & didn’t need anywhere near the amount of IVIG that she did who have been granted wishes.
And to top if off Emily’s school is doing a fundraiser for Make A Wish and she keeps asking me if she’s going to get a wish too.
April 25, 2008 at 9:43 am
Just try to hold out a little longer. If the regional intake person I called does not call back, then I will call her again. I am going to call you right now!!!
AnonymousApril 25, 2008 at 10:26 am
I am so sorry things haven’t worked out for Emily. Sometimes rules suck, don’t they? Too bad they can’t see any gray areas. Maybe Emily’s school should donate the money to Emily and her wish instead of giving it to the Make A Wish foundation…..food for thought.
Take care and keep trying.
AnonymousApril 26, 2008 at 10:03 am
Well I called the other wish organization & they are sending paperwork to Emily’s dr. We’ll see what happens but I’m not even hopeful about it.
I had a talk with Emily last night & told her that she might not get a wish because there are so many other kids that need wishes too but they are very sick. Luckily I have a very kind & loving child who can understand that. She would rather that the sick kids get to go before her…of course she still REALLY wants to go.
I told her that next year (hopefully) we will take her on our own. I told her that we might have to camp next to Disney (instead of staying at a hotel to cut costs) but that I promise she will get to go. She asked if she could still stay in Cinderella’s castle but I told her I didn’t think so because there are a lot of kids that want to stay there too, but that it wouldn’t matter where we stayed as long as we could go as a family & have fun.
Even if I have to take every penny from our tax money next year I’m getting her there! Does anyone know if we have to deduct this economic stimulus plan money from next years taxes like we did before? I hope not because that will make it a little rough to get to Disney.
PS, Emily sang (A SOLO!) at her school’s variety show last night. She did GREAT!
April 26, 2008 at 6:31 pm
YOU ARE NOT CAMPING, EVEN IF I HAVE TO PAY PART TO SEND YOU!
Dawn Kevies mom
AnonymousApril 28, 2008 at 4:59 am
I’m so bummed for Emily – but I’m not giving up either. Miracles do happen – we do buy lottery tickets and somebody has to win right? We’re [B]all [/B]going to Disneyland if we happen to win the lottery, but in the meantime I’m liking the fund raiser idea.
BTW we camped at Disneyland when we were kids – that was a thousand years ago but I remember it being fun because it was at Fort Wilderness and they had theming and activities for kids at the campground. Hopefully you have a trailer with air conditioning though – heat and humidity might dampen her spirits a bit (pun intended.)
AnonymousApril 29, 2008 at 10:20 pm
Julie – We already did a fundraiser to help pay for the mold testing at our apartment. I felt like such a jerk for doing that, I don’t think I could do it again. I felt HORRIBLE asking people to donate. I’ve always done things on my own.
Let me tell you, if we ever win a big jackpot I am going to start my own wish organization. I’m going to send families, whether it’s sick kids or sick mom or dad’s, to anyplace they want to go.
How’s your IVIG going lately? We’re changing Emily’s schedule again. Now she’s going to get it every 2 weeks then every 3 weeks then every 2 weeks again. Then at the end of June, if all goes as planned, she’ll go just every 3 weeks. We’re hoping that by the time school starts again we can have her at once a month.
AnonymousMay 2, 2008 at 5:24 pm
You may want to go to gkth.org, there are several orginizations that can refer you. Give Kids the World is wonderful. It is a great place for the kids, it is in Florida. Just check out the website.
We were able to use all the facilities when we went to Florida through Make a Wish.
I hope Emily gets her wish even if its not through Make a Wish. I know we appreciate all they did for our son.
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