I hope I'm doing this correctly! We are so excited since finding out last week that our 8 year old son, Davis, has been approved to have a wish granted through MAW! We also have a 12 year old daughter, Carolina. Davis says he definitely wants his wish to be a trip to Disney World and Universal Studios. He says he wants to eat with Lilo & Stitch and train to be a Jedi! We haven't even met with our Wish Granters yet, but I am trying to find all of the information I can. My kids have never been to a theme park, and hubby and I haven't been to Disney since our school days. We aren't really financially able to do vacations, so this will definitely be an epic experience!
I wasn't sure if Davis qualified, as he isn't in imminent danger with his conditions. They do pose risk, though, so I assume that is why his doctor signed off. He has Eosinophilic Esophagitis, Ehlers-Danlos Syndrome Hypermobility Type, gastroparesis, dysautonomia, has a G tube and can only eat one food besides elemental formula, asthma, and has many anaphylactic food allergies. There is no cure, and these are chronic and lifelong conditions.
All four of us have actually been diagnosed with Ehlers-Danlos Syndrome, a connective tissue disorder. Odd for my hubby and I both to have it, but we found out that we do when we went to the geneticist for our kids. Our daughter Carolina does have some problems with it as well. My husband is also disabled with Type 1 Diabetes and horrible neuropathy pain from it. I am not technically declared disabled, but I am not well with fibromyalgia, degenerated joints in my back, and the EDS.
One of my biggest initial questions is how are we going to do Disney and Universal with two kids and two parents that have chronic pain and realistically need to not be walking the whole time. Davis has a medical stroller of his own, and it reclines because he tires quicker than most kids. My daughter doesn't have a wheelchair, and neither do my husband or myself, but the reality is that we may need at least a couple of scooters that the three of us can take turns on - two riding and one pushing Davis in his stroller. I wonder if this can be accommodated, and if they will allow the 12 year old to drive the scooter. She does in stores when she needs to, but not all the time. Her ankles turn in awkwardly due to the EDS and sometimes it is very painful for her to walk far.
I am sure we will get it sorted out. We have never even flown with the kids, so they see that as an exciting gift all by itself!
If you have the answers to my scooter questions, or any other advice, please let me know! Thanks!
I wasn't sure if Davis qualified, as he isn't in imminent danger with his conditions. They do pose risk, though, so I assume that is why his doctor signed off. He has Eosinophilic Esophagitis, Ehlers-Danlos Syndrome Hypermobility Type, gastroparesis, dysautonomia, has a G tube and can only eat one food besides elemental formula, asthma, and has many anaphylactic food allergies. There is no cure, and these are chronic and lifelong conditions.
All four of us have actually been diagnosed with Ehlers-Danlos Syndrome, a connective tissue disorder. Odd for my hubby and I both to have it, but we found out that we do when we went to the geneticist for our kids. Our daughter Carolina does have some problems with it as well. My husband is also disabled with Type 1 Diabetes and horrible neuropathy pain from it. I am not technically declared disabled, but I am not well with fibromyalgia, degenerated joints in my back, and the EDS.
One of my biggest initial questions is how are we going to do Disney and Universal with two kids and two parents that have chronic pain and realistically need to not be walking the whole time. Davis has a medical stroller of his own, and it reclines because he tires quicker than most kids. My daughter doesn't have a wheelchair, and neither do my husband or myself, but the reality is that we may need at least a couple of scooters that the three of us can take turns on - two riding and one pushing Davis in his stroller. I wonder if this can be accommodated, and if they will allow the 12 year old to drive the scooter. She does in stores when she needs to, but not all the time. Her ankles turn in awkwardly due to the EDS and sometimes it is very painful for her to walk far.
I am sure we will get it sorted out. We have never even flown with the kids, so they see that as an exciting gift all by itself!
If you have the answers to my scooter questions, or any other advice, please let me know! Thanks!
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