We recently received a wish for our granddaughter that we are raising. She has OI, a brittle bone disease that is very painful. She has had 30+ fractures and 10 surgeries. She is a little person. I am raising two others with same disease. After having Disney Trip denied because I had to have emergency surgery, and Make-A-Wish was anxious to get her wish done, they said she could have her next wish which was handicapped playground equipment.
After waiting weeks, we were told no, she might fall. They said they would grant her third choice, a playhouse. They said it would be 4x8. We said no thank you. Finally they said 10x16, cream color, with a porch. Make-A-Wish policy is that no cost is incurred by the parents. At our expense we had to take down our fence, spend over 100 on preparing the site after delivery put the fence back up.
I was crushed when it was delivered. Maddy got a tool shed. The door is made of vinyl siding, the windows are under the roof she can't open them or see out of them. It is not accessible, so in her wheelchair she cannot get in, neither can my other two kids in their wheelchairs. It is just rough splintered 2x4's and we have found 5 large screws sticking out.
It has tractor doors at one end, but the latch is 6 ft. up and I can barely reach it. The steps in are lined with the steel they make truck tool boxes out of. The kids are not allowed in, even if they could get in with their wheelchairs. It is too dangerous. Our hope is that in the next few months we can afford to have a construction company rebuild it.
I wrote Make-A-Wish headquarters, their response was we are not allowed to improve the playhouses. But on their own website, they have pictures of beautiful playhouses. One has pink walls inside with a mock fireplace, and furniture. One is made to look like a bus but has electricity, an arcade, TV, DVD player, fully furnished.
They told us that we were to throw a party to celebrate the playhouse, but that they would only provide one food, so it could either be cake or pizza but not both. They sent one volunteer to help with his son, we had to provide tools, $20 in batteries, for a kitchen set for toddlers that she can't reach. I provided everything but the pizza. We ended up calling everyone and cancelling except for a few that we couldn't get ahold of. We were embarrassed to have a party for a tool shed that the kids can't go in.
Maddy is going to be 9 in two weeks, and last Wednesday had another extensive surgery. She is heartbroken over the playhouse and now doesn't want to even go into the backyard at all. Shame on Make-A-Wish for hurting a child that has gone through hell in her young life and taking away something that could have made her smile. I found a website that evaluates wish foundations, this one has Make-A-Wish with a 45% success rate...
My 2 1/2 year old son was just rejected by Make-A-Wish. He has congenital heart disease and has endured 5 heart surgeries so far. He will require numerous open heart surgeries throughout his life. His last surgery did not go well, he went into cardiac arrest twice, once on the table and the second in recovery as I tried to comfort him, his heart rate went to 230 bpm as they brought the crash cart in and kicked us out of the room before they were able to stabilize him. He is now living without a pulmonary heart valve and will do so until he is old enough to find a suitable replacement.
His favorite character is Mickey Mouse and I thought it would be nice to visit Disney World for his wish. He is the kindest and most caring 2 1/2 year old you will ever meet. His heart condition has made him far wiser than most adults. My son came as close to death as anyone can. I cry just recalling that day. I wanted to cry when I read the rejection letter from Make-A-Wish stating he doesn't fit their criteria. I'm sure he wouldn't had he died.
Make-A-Wish's criteria are all about making money not fulfilling wishes for sick children. Don't give Make-A-Wish a dime. If you want to make a donation to make a difference in a sick child's life ride the elevator in your local children's hospital. It won't take long to find an appreciative child and family.
PHILADELPHIA, PENNSYLVANIA -- We just got back from my son's Make-A-Wish trip to Disney World and it was a disaster. Due to poor planning he never got to fulfill his wish. He spent the majority his 5 days in Orlando at the villa hunting for lizards and blowing bubbles. On the few occasions we did manage to get him out - nobody honored his tee shirt or badge. The worse part was arriving back home and being stranded at the airport with no ride home. We could not just get a cab or call someone to come get us because my son is in a wheelchair. My child is so disappointed and I have never been so stressed out in my life. It was the most horrible distressing experience ever.
According to our local Make-A-Wish chapter in PA, they were sorry his trip was a disaster but explained that most of their wishes are successful and that their track record speaks for itself. This may sound good on paper if you are trying to gain donations or funds, but for my son, who was the one percent they didn't plan properly for, it was heartbreaking. If your child has a wish and is in a wheelchair I recommend that you refine their wish within your geographical area so you do not get stranded.