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3coolkidsmom
March 22nd, 2004, 07:31 PM
Dear All,

I wanted to start a new post on Make A Wish so that those who have not had a MAW experience can learn from those of us who have.

When I was first approached about Make A Wish for my children, to tell you the truth, I was appalled. I thought,"This is not for us, this is for children who have a dying wish, a last wish..." I remember thinking that we were a long way from that time in our lives and for someone to assume we were there by referring us was just wrong. That same week, a wish granter from MAW called to schedule a meeting with our family and I started expressing my concerns right off the bat. The kind woman on the other end of the phone told me MAW has evolved into an organization which grants wishes to children with life threatening conditions. She said that their fondest hope is to have a child grow into an adult and be able to say, "Make A Wish helped me during a time in my life when my family needed something good to look forward to."

Our wishgranter explained that families of children with serious medical conditions are often under stress as a family because of the child's diagnosis. There are medical bills, appointments, school concerns, sibling concerns, missed work, financial strain, emotional rollercoasters, hospitalizations and illnesses, just to name a few. Make A WIsh strives to give the family a break from theses stresses with the granting of a wish. When she put it that way, I thought, "O.K., I guess maybe we do qualify."

Maddie was the first child in our family to receive a wish. When she was six, we went to Disney and Give Kids the World Villiage. To this day, we talk about it any time Maddie is having a needle stick, surgery, or MRI. It is the one memory I can pull out that always brings a smile and takes away tears in a heartbeat. It was the greatest gift anyone could ever imagine and the looks on my children's faces will be etched in my mind forever.

A few years later, Spencer began the ERT trial in California. The tests at that time were pretty invasive and some pretty unpleasant for a happy-go-lucky eight-yr-old. We decided when it was all over, Spencer could call Make A Wish. It got us through some rough patches, just planning and dreaming about that wish.
In the fall, Spencer's wish was to visit a dude ranch. Unfortunately, Maddie ended up having emergency surgery the day we were suppose to leave. The ranch closed that weekend until spring but while waiting for spring to come, Spencer's passion for horses turned into a passion for water and he changed his wish to having his very own swimming pool. Make A Wish put in a beautiful above ground pool with a deck and our whole family has spent countless hours in it, not thinking about MPS.

If you have dismissed Make A Wsh for your family, give it some more thought. Your family deserves it.

The Rea Family
March 22nd, 2004, 07:48 PM
Amy,
I want to thank you for this post.
I have thought about MAW for Christopher.
I too had the same thoughts as you, but after reading your post, I think that this is something that would be a wonderful, memorable experience for the whole family.
I'm glad to hear that your children had such wonderful experiences with MAW.

zachiesmom
March 23rd, 2004, 11:04 AM
Wow!!!
Amy thank you so much for the info. I too had the same impression about Make a wish and I too am so glad that your children were able to experience their wishes AND be able to enjoy themselves!!! :)

March 23rd, 2004, 11:53 AM
I too, have the same thoughts you did about Make-a-Wish. I always thought it was for the dying kids to have one last bit of happiness. I have been thinking of ways to save money so that my family and I can make it to the conference in December, and it seems as if everywhere I called and the things I tried to do, so far, has been a dead end. One of our wonderful MPS forum members (you know who you are) emailed me and said maybe I should try the Make a Wish and maybe they could help us. I just keep thinking.......I cant ask anyone for a hand-out (its that stupid guilt thing AGAIN). I guess I feel like people will pity us....I hate that.
Amy your post has helped me by giving me a different way of looking at the Make a Wish foundation. and I will talk to my husband and see what he thinks. :?
Misty :)

Sharon Cochenour
March 23rd, 2004, 01:00 PM
When Andrew was first diagnosised our gentics doctor called Make a wish, after she said their was nothing to do but take him home and love him. I really wanted to wait untill he was older, but was told to do it will he would enjoy it. After I thought about the chance of mental detoration I decided to go. Make a wish was able to connect our wish with my sister Barbara who was going with her foster child. That made it even more special because we went at the same time. Andrew enjoyed disney so much and it was a much needed break from doctors, tests and hospitals.

Connecting your make-a-wish with the conference would be wonderful. You could still could go to disney all day and still come to the conference in the evening. We could even meet at the Give kids the World Village. My children enjoyed there share of ice cream at the village. I am planning to visit the village while we are in Florida.
Go to the web-site at http://WWW.GKTW.COM. and you can see more about the village, which is very near Disnetworld.
Sharon

Barbara Pryor
March 23rd, 2004, 02:07 PM
As Sharon just said, Make A Wish was wonderful. When I took my son Shawn he loved it. He did dialysis two times the week that we were there. Give Kids the World is a place almost as good a Disney. They have a couple of rides but everything is for the child. My son got to eat all the ice cream that he wanted and was not suppose to have it. He went to dialysis at noon and the ice cream shop opened at 7am so he could eat everything that he wasn't suppose to eat and then dialysis would clean it out of his system before he got sick from it. He really loved it.
It was nice to see Andrew with his Wish also. i am glad that they did our together or else I would have never got to see how Andrew reacted to the characters. He really loved the carousel at Give Kids the World. When we go to the conference we will go found Shawn and Andrew's star. Each child is given a star and you put their name and date on it and they place it on the ceiling and it will always be there. Every thursday they have Christmas. They said that some children are too ill and might not make it to see another christmas so there is christmas there each week.
You will love it and not want to come home. The staff are so wonderful and can get you whatever you might need. It is the most wonderful place in the whole world to take your kids. :)

Paulina Jump
March 23rd, 2004, 03:24 PM
Andrew went on his wish trip to Disney last April. We had such a wonderful time. Give Kids the World is such a magical place. I thought it was neat that they would bring in gifts every morning not only for Andrew but for his little brother Alex. We had to go to the Walmart to get another suitcase to come home, they gave the boys so much. We plan to go visit also in December.

Andrew got to represent GKTW this past July at the Kentucky Speedway. He met Darrell Waltrip and Pam Landwirth president of GKTW, went down on the track and our family was introduced in front of 50,000 people.

Paulina

Tami
March 23rd, 2004, 07:45 PM
I just broke down and put in for MAW for Sami. I swear it was the hardest call I had to make so far. The woman from MAW was so sweet and made it easy on me!!!

I always thought we didn't need MAW. That's for dying kids and I know my kids are going to be fine!! Hey, let me live in denial land! It's a happy place! :hug:

When Sami started chemo, I knew her dream was to go to FL and swim with the dolphins. With all the medical bills, I knew I could not afford it in the near future, so I contact MAW for her wish. I cried so hard when the letter came back "medically approved". It's not that I didn't know that both of my kids are approved for MAW, it was just seeing it in writing that broke my heart!!!!!!!!!!!!!

I don't know when her wish will come true but I hope it is a special as she is!!!! Now, I need to get her brother in. He is easy. He just wants to meet Bill Murray or Jim Carey! Boys!!! :lol:

How does GTKW work? They are not in the park right? Is there transportation to DW? Can you go explore FL and the other parks? It sounds great and I hope Sami gets to stay at GTKW!

Hugs,
Tami

Barbara Pryor
March 24th, 2004, 07:20 AM
Tami,
If you fly then they provide a rental car for you. You can go where ever you want to go. We drove 2hours to the beach. MAW will provide you with spending money and pay for everything. You get tickets to many things including Disney world, MGM Sudios, Hard Rock Cafe, Sea World and other things. Sami will get a badge from Give Kid The World and she will get to the front of every line at Disney and the other places that you have tickets to. These places treat the kids very special. Even the Characters at Disney that you can get pictures with you don't have to wait. You see an attendant and you get to go to the front of all the kids waiting. If you need something they will help you. It is like having an extended family go along with you. :) Sami will have a wonderful time.

March 24th, 2004, 12:32 PM
Ok everyone......
I did it. I talked to our pediatrician and he told me to call MAW. I did and they are starting the paper work. As I asked our doctor what he thought about it, he said Seth qualifies because MAW is for kids with life threating diorders and then he looked at me with this "you know what the outcome is gonna be for Seth" look. And then I realized, I have always known what MPS can/will do to Seth BUT part of me has been denying that it would actually happen and that I would need to think about doing things with/for Seth while he still can walk, talk, and before he leaves this earth. Its crazy how we can deny things that we are expecting to happen :roll:
Misty

Sharon Cochenour
March 24th, 2004, 03:16 PM
Tami and Misty,
Glad to hear the paperwork is started.
I totally understand I think I live in denial land. But I decided the trip was all about Andrew and glad we went. Hopefully more people can connect and go at the same time.
Sharon

mom2cris
March 25th, 2004, 10:27 PM
We never considered MAW. I guess you could say that we were in denial also. After reading your alls post it sounds like we should. I'll need to talk with our genetics Dr. about it. Come to to think of it, he never even mentioned to us. I saw it once in the newspaper, but never thought it would be for my child. Lately, he has been regressing so much. We do something for him every week end. We take him to fairs, parks, lakes, because he loves the water. This weekend we take him to South Padre Island!!

I wish that I didn't haven't to think about something like this so soon.

Nilda and Cristian