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!
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!
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. 
Can't wait to hear what she wishes for. So sweet that she made princess crowns for her wish granters. 
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! 
