Disney with Alopecia

We are hoping to travel to Disney World this summer. We've taken our 5 year old to Disneyland twice in recent years but it was before her Alopecia came out.

I know she'll want to do the Bippity-Boppity-Boutique - will she still be able to do it even with very minimal hair (she's got only about 10% remaining right now)?

Also, I was thinking about trying to get her a Guest Assistance Pass (Disney's Special Needs Pass)for the time that we are down there. It's not a line jumping pass but on their website it says that one can be issued for individuals for various medical, emotional, and physical reasons. My daughter's meds cause her to be sensitive to the sunlight. Her neck got red just being outside for 20 minutes last week when the nasty NorthEastern winter weather finally broke. Do you think she'd qualify for a pass because of her sun sensitivity?

Any other advice for doing Disney with my daughter? She is totally in love with Disneyland but we've never traveled with her alopecia yet and I;d like to make it as fun as possible for her since we are going because of all she's been through in the past few months.

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Replies to This Discussion

Permalink Reply by Cindy (Duncan's Mom) on March 25, 2010 at 9:50pm
Jen, We have traveled all over with Duncan having Alopecia -- Hawaii, cruises, camping, beach, Disney, etc. We treat him as we would any other child. We do however make sure that he wears sunscreen and a hat. He has some hats with wide brims and some that have flaps that cover his neck. Our older child also wears them at times even though he doesn't have alopecia. I am sure that you would qualify for the special pass. I hope you all have a safe and fun trip!
Permalink Reply by Jen Deletto on March 25, 2010 at 10:01pm
Any suggestion for a good strong sunscreen that is easy to apply to a head that has some hair on it? I am thinking the spray on fine mist ones would be the easiest to use!

Thanks so much for the words of encouragement. We treat her just like we've always treated her...she's still my Kayla and that will never change but I am definately concerned with her being in the sun. She wants to go to a sports day camp for a week this summer but it would be 5 hours a day out in the sun. SHe wears hats but I am sure come summer time, she'll get hot and want to take them off.

Thanks!
Permalink Reply by rebecca finlaw on March 26, 2010 at 8:22am
Hi Jen,

We took our 3 year old to Disney this past Novemeber and he had a great time, hats and sunscreen were a must. I saw a few kids there with alopecia as well. I find the soild stick sunscreen to work the best, such as nutrogenia or california babies something for sensitive skin yet still has a spf of 70+ . He has lost brows and lashes which makes him more sensitive and he tends to get the lotion in his eyes. I think you would qualify for the pass too ! Let me know how you make out and have a great time.
Permalink Reply by Lisa Leppert on March 27, 2010 at 12:43pm
We did Bippity-Boppity-Boutique this summer. I have two other daughters and they had their hair done. They have different packages. I didn't get a discount on the price, but they taped the crown to the top of her head ( she has totalis) and she was in heaven. They were great about it. They also have hair pieces so if she has a little hair they may be able use that as well. I think she will have a lovely time. She may get some looks. we always do when we go somewhere new. We live in a pretty small town so eveyone is used to seeing Alexandria at home. I wouldn't know about the pass. Alexandria is fine in the sun with hats and sunscreen. Hope this helps.

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