Maddie Makes a Wish

[Mom2M07]

Hi everyone! I am very excited to start a PTR for my daughter Maddie's wish trip. The whole process, from referral to approval to our upcoming meeting with our Wish Granters has only taken a month, so we are overwhelmed and excited and ready to wish! Maddie is 5 y/o and is in Kindergarten. She had a very rough first 18 months of life, with irritability, failure to thrive, and a host of other medical issues. At 11 weeks old, we discovered that she had an intestinal malrotation, which was repaired in surgery. However, the surgery shut down her GI system for awhile and she ended up on IV nutrition. At 4 months old, we found out that she was born with an extra portion of her 22nd chromosome, which carries a whole host of possible medical issues. At 18 months old, she transitioned off of IV nutrition and began to hit some developmental milestones. By her second birthday, she was doing pretty well, and starting to walk. She began preschool at age 3, and her health has declined since that point. In addition to her chromosomal abnormality, Maddie has been diagnosed with a metablic myopathy (likely mitochondrial disorder). We have made the decision not to pursue any invasive testing, given the general consensus that we aren't dealing with a condition that has a cure or effective treatment. On a good day, Maddie is spunky and happy and tries to be like any other almost 5 1/2 year old. But on her "low battery" days, she sleeps most of the day, experiences muscle pain, has migraines, and seizures. She also has a long list of lab abnormalities, including high cholesterol, blood sugar instability, carnitine deficiency, and lactic acidosis. Maddie doesn't exactly understand that she's sick. She just assumes that all kids take a pharmacy full of medications and see doctors all the time. We've been fortunate in keeping her out of the hospital lately, which has certainly helped.

Maddie will be meeting her wish granters on Wednesday. She spent the morning decorating "princess crowns" for them. She's still working on her exact wish, but it will definitely include Disney World!

Looking forward to meeting everyone and sharing our journey!

[Lilfoot93]

I am so glad Maddie gets her wish! Looking forward to hearing all about your planning and your trip! Do you have any idea on when you might want to go? We go on Trev's wish trip in June.

Jackie

[angel's momma]

So sorry that Maddie, and your family, has been through so much Can't wait to hear what she wishes for. So sweet that she made princess crowns for her wish granters.

[NEmel]

So glad Maddie is getting her wish, sounds like she and your family have been through a lot. Can't wait to hear all about her meeting with the wish granters and what her final wish will be!

[Mom2M07]

Maddie met with her wish granters, Linda and Patricia, last night. She was SO excited. When she found out they were coming, she decided that she HAD to make them princess crowns. So, off to Michael's we went for glitter, stick-on gems, and cardboard crowns. She did her best 5 y/o job of decorating them with lots of glitter. She also decided that wish granting was worthy of a costume, so she dug out her Tinkerbell costume "so that they'll know I'm a fairy wish kid." The wish granters arrived on time with a MAW barbie and a Minnie Mouse puzzle set for her. She gave them their crowns, which they put right on. We sat with them and filled out a bunch of preliminary information. At this point, our Tinkerbell was running around the living room with frantic energy. We got her settled down and she began answering the granters questions. When she got to the "big moment" she told them exactly what she wanted: to "go to Disney World and be in a parade on Main Street and ride a float or car." Her second wish was for a dollhouse that she didn't have to share with anyone. She also requested that her grandparents join her on her Disney trip. She began dancing and playing with her new puzzles, while we filled out all of the apperwork for MAW and GKTW. Due to her heat intolerance and metabolic issues, we can't travel during the summer. We gave them three sets of dates between late April and early June. Her wish will be submitted for medical approval and then we should find out our dates. This whole process has been surreal so far. Maddie didn't even know that she had been referred for MAW until she was approved late Friday, so in the course of the last 6 days, she received her "special letter," made princess crowns, perfected her wish, and met with her wish granters. She has no concept of time, so thinks we are leaving at any moment. As soon as we have dates, I'll have to create a countdown for her. Pictures soon, I promise!

[angel's momma]

Glad she's having such a great time. Hope you get dates soon. We went in May last time, and the weather was wonderful

[Jakentysmom]

YAY so glad she gets a wish So fun that she wants to be in a parade. Jacob didnt really wish for anything to do IN disney other than he wants to see the blue man group that performs at universal or something haha. He LOVES music!

Our stories are not all that different. My son has mitochondrial disease!! Sorry you have been going through so much with her but I am so glad you guys will at least have a little bit of time to relax and have a good time.

Maybe we will be going the same time?? We also can not go during the summer due to the same heat intolerance. So we submitted dates between March and early May. We met with our wish granters a few weeks ago. We are still waiting on our dates.

I am subscribing to your PTR so that I can keep up with you guys!

[Somer]

Hi, I'm following along! My daughter also had her wish when she was 5yrs. Can't wait to hear more!

[Mom2M07]

Thanks everyone, for following our journey! Life has been busy, but I'll put some pictures up soon!

[Mom2M07]

Ignore this one ... just trying to figure out the link in my sig

[billwendy]

Cant wait to hear more of your plans!!!!!!

[Mom2M07]

Maddie's 4th Birthday Trip to Disney last year


Another Disney picture


Maddie as "Merida" for Halloween


Our family


Becoming a Princess!


Meeting with the Wish Granters

[Jakentysmom]

Such a cute princess

[JWCJ]

Aw, she really is quite the princess!

[angel's momma]

Love the pictures, and the crowns she made for the wish granters