kellyw8863
DIS Veteran
- Joined
- Jun 4, 2009
- Messages
- 647
I just wanted to post ours experiences here to help anyone who may be trying to accomplish the same thing. The last time we went to WDW was with MAW - our daughter was four. Three years later and her health had stabilized enough that we felt comfortable trying it on or own. She has mitochondrial disease, which is a failure of the mitochondria to produce enough energy at the cellular level to adequately sustain life. It is an unpredictable, fickle disease that is progressive and life threatening. Dd deals with significant GI dysmotility, immune deficiency, heat intolerance, blood pressure issues, vision disturbances, muscle weakness, chronic pain, etc. She has a g-tube and uses a wheelchair to help her preserve energy, but she can still experience a metabolic "crash" within minutes even though we do everything "right".
Our flight - We flew Southwest and had no problems. I packed all of her medical stuff in a separate carry-on and her meds in a cooler with freezer packs. TSA had me unpack everything and they checked it all, but they were super helpful and respectful, as were other passengers who were trying to move through security at the same time. We paid for early boarding for my husband and my other daughter, and I pre-boarded with dd. The flight attendants were great - they helped me with folding her wheelchair and her bags. Things were a bit more stringent on the way back, as it was post Marathon Bombing and we were flying into the Boston area (Hartford). Orlando was tough, but again, TSA was great and one of them stayed with me until we were all the way through.
The Resort - We stayed at WCB, and they were great despite not being Disney owned. We had some medical stuff shipped directly there through our medical supply company, and it was all there waiting for us.
The Parks - Our experience was much more consistent this time around than even on her Wish Trip in 2010. We got her GAC at Epcot and while I had a whole spiel planned out in my head, the CM asked a few carefully appointed questions, and then came back with an appropriate card. While in the parks, everyone was so incredibly helpful. We didn't feel judged at all and we were treated pretty consistently throughout. Every time we went through the bag check, the CM would make sure that we knew where first aid was and was sure to mention that they'd store her medical supplies for us or get us quick treatment in an emergency. It was just nice that they genuinely seemed to care. At the Wishes Dessert Party, it was clear that dd wasn't doing well, so a CM led us through the back as soon as it was over, which was key in getting her out of there quickly.
Health wise, dd did pretty well. She ran high autonomic fevers our first two days there, and I thought for sure we'd be doing a hospital tour instead, but she pulled through. We feel incredibly indebted to all the folks there who helped us along the way so that we were able to have an amazing week. I know not everyone's experience s the same, but it is possible to do Disney with a medically fragile child.
Our flight - We flew Southwest and had no problems. I packed all of her medical stuff in a separate carry-on and her meds in a cooler with freezer packs. TSA had me unpack everything and they checked it all, but they were super helpful and respectful, as were other passengers who were trying to move through security at the same time. We paid for early boarding for my husband and my other daughter, and I pre-boarded with dd. The flight attendants were great - they helped me with folding her wheelchair and her bags. Things were a bit more stringent on the way back, as it was post Marathon Bombing and we were flying into the Boston area (Hartford). Orlando was tough, but again, TSA was great and one of them stayed with me until we were all the way through.
The Resort - We stayed at WCB, and they were great despite not being Disney owned. We had some medical stuff shipped directly there through our medical supply company, and it was all there waiting for us.
The Parks - Our experience was much more consistent this time around than even on her Wish Trip in 2010. We got her GAC at Epcot and while I had a whole spiel planned out in my head, the CM asked a few carefully appointed questions, and then came back with an appropriate card. While in the parks, everyone was so incredibly helpful. We didn't feel judged at all and we were treated pretty consistently throughout. Every time we went through the bag check, the CM would make sure that we knew where first aid was and was sure to mention that they'd store her medical supplies for us or get us quick treatment in an emergency. It was just nice that they genuinely seemed to care. At the Wishes Dessert Party, it was clear that dd wasn't doing well, so a CM led us through the back as soon as it was over, which was key in getting her out of there quickly.
Health wise, dd did pretty well. She ran high autonomic fevers our first two days there, and I thought for sure we'd be doing a hospital tour instead, but she pulled through. We feel incredibly indebted to all the folks there who helped us along the way so that we were able to have an amazing week. I know not everyone's experience s the same, but it is possible to do Disney with a medically fragile child.
Were you able to go back and visit the village?
