Anyone ever take a child w/ Albinism to WDW?

[disneyworldmama]

My youngest daughter has albinism, lack of pigment in the eyes,skin, and hair. We go to WDW every November and this will be her first time and I was just curious if anyone else has been in a similar situation. We have to be careful of the sun and I am kind of nervous about it.

 

[My2Angels]

I have 2 girls with oculocutaneous albinism. My oldest is 5 years and my middle is 4 years. I also have a son, who is 2, who is normally pigmented. We took them for the first time in December. It was wonderful! The sun was definintely an issue. Fortunately most of our days were cool enough for long sleeves. We also had hats, sunscreen, and sunglasses. We are returning in September and I am a little more concerned. They both wear UV proof rashguard shirts for longer outdoor activities and swimming in the summer. We are planning on them wearing the shirts for days and letting them get wet in fountains and cool off (since they dry like swimwear).
The Guest Relations desk on Main Street will give you a special pass if you go there your first day. Ours mentioned providing a shaded area to stand, and allowing them to be in front of rides and theaters (our girls are legally blind). They even mapped the shady places for us to stand during parades. Any ride in the sun, like Dumbo, Aladdins carpet ride, and the racecars, we were allowed in the handicap line, just show your pass and walk right up! That was great!
Our biggest issue, or sad one for mommy, was visual limitations. There were lots of shows they could not see, even from the front row. The parades were great, and the 3D movie types, like Philharmagic were good, but Country Bears they could not see at all. I must say that God was with us during the parades because it seemed that during each one at least one or more characters came right to the girls and spoke to them! And I shed many tears the night of the electrical parade because my middle daughter Sarah just squealed with delight seeing all of the pretty lights.
Overall, it was a wonderful experience and they cannot wait to go back. As my doctor has said before, don't get discouraged because they cannot see what you do. They think everyone sees like they do. Also, there were so many things they did see and do, they never knew they missed anything.
I wish you well on your upcoming trip. I would love to talk with you more, since it is quite rare to encounter many families in this same situation. God Bless You and your family!

 

[Laurajean1014]

Bump worthy......

 

[mad hatter fan]

Hi. My husband has albinism too though not the same kind as your daughter. He has pigment in his hair and eyes but not his skin so he has to be careful in the sun as well. When we go to Disney he is just very careful with sunblock and reapplying it. We also usually avoid trips durring the summer when the sun is even more intense and for longer hours. I wouldn't worry about it, just take all of the precautions you can; lots of sunscreen, have her wear a hat if she is willing. (Of course, check with your doctor to see what advise he has)

You didn't say how old she is. If she will be riding in a stroller make sure to bring your own and provide as much shade for her while in it as possible. I remember seeing some posts about some really good stroller sunshades a while ago. Oh, and remember that while a lot of WDW is out in the sun, much of it is shaded or indoors as well. When you are planning each park day, arrange to do as many of the out in the sun things as you can for in the early part of the day or the evening. Remember that the sun goes down earlier in Nov. than in the summer so you could possibly get alot done after the sun goes down or is much lower in the sky.

Maybe you'd want to consider getting some of those special clothes that block the suns harmful rays. I remember seeing something you can wash your own clothes with to increase their SPF factor. I think maybe I saw it in the stores along with the RIT dyes for coloring clothes. I'd look into getting some sunglasses as well. They make some for babies with comfy elastic bands to hold them in place. The One Step Ahead catalog is where I've seen those and also some SPF clothing. If you will be trying sunglasses and hats for her then I would start let her get used to wearing them well before the trip.

That's all I can think of now. I hope this has been helpful. I think you will be able to take her to WDW just fine and will have a great time! You just might have to do Disney a little differently and perhaps plan out your days more exactly than you may have done in the past. Don't forget to talk to your doctor about it though. Have a great trip!

 

[disneyworldmama]

Wow, I was not expecting anyone to reply! Thanks for all of your advice, it really made me feel better. I am just a worry wart and have no idea what to expect this coming November. It will be the first time WDW is different for me, like I said we go every November and have been since I was little.

My2Angels, wow I was shocked to see that you have two dds with this condition, it made me smile. Like you said, it isn't everyday you meet someone in a similar situation. In regards to the pass did you have to have a note from the doctor or did you just go up and request the pass? My daughter will be 18 months in November. Did your daughters ever have to have eye surgery? Madison will be having strabismus surgery on the 28th and I have no idea what to expect. I would love to talk to you more it is so nice to meet someone in my situation.

Thanks to all that replied, you all helped so much and made me realize that everything will be a ok!

 

[HappyDznyCamper]

You can get more info on the Guest Accomodation Card(GAC) over on the Disabilties board, you may want to post your ? over there too. Read the sticky at the top you will find lots of helpful advise.

 

[Debbiebee68]

My children do not have pigmentation problems, but as a family, we are naturally quite fair. Buybuy Baby sells a WONDERFUL sunshade. It goes over the regular shade on a stroller and elongates the canopy by at least a foot! Saved my little guys' legs for sure! I am sure it would work on the Disney rentals as well. They had 2 models, one for $15 and one for $40. I bought the more expensive one because I went for color and longevity. The less expensive model would be great for a trip though. If your girls are like my daughter, they will still want a stroller. My DD who is 7 used it all 4 days we were there in July. Good luck!!!

 

[all4fun]

One of the shades is called the Rayshade by Kiddopotamus I have seen them at our local Babies R Us store, Target.com and Walmart.com (online only).

The other one I see mentioned a lot but have never seen IRL is the Protect-a-Bub Sun shade

They look very similar to me. The Ray Shade is about $15 for a single size one and the Protect-a-Bub runs for about $40.

They both claim to provide SPF 50+ protection.

hth.

Btw, My2Angels. Your post really pulled at my heart strings! Your girls sound very special. I'm glad that Disney will make accomodations for kids like yours and they had a wonderful time on your last trip.

 

[Em_in_FL]

One of the shades is called the Rayshade by Kiddopotamus I have seen them at our local Babies R Us store, Target.com and Walmart.com (online only).

The other one I see mentioned a lot but have never seen IRL is the Protect-a-Bub Sun shade

They look very similar to me. The Ray Shade is about $15 for a single size one and the Protect-a-Bub runs for about $40.

They both claim to provide SPF 50+ protection.

hth.

Btw, My2Angels. Your post really pulled at my heart strings! Your girls sound very special. I'm glad that Disney will make accomodations for kids like yours and they had a wonderful time on your last trip.

No experience with albinism here (just fair skinned and easily burned!) but I did want to second the opinion of these sun shades... they're a BIG help!
We have the kiddopatumus one and it helps a lot!

Have fun on your trip!

 

[dijid]

No experience with albinism, but DS couldn't use sunscreen when he was a baby due to skin problems. We never would have survived our Disney cruise without this one:

http://www.sun-chasers.com/infants.htm

 

[I Believe n Fairies]

I was going to post about my friends two girls, but I see that she beat me to it!! Hi, My2Angels!! Her girls are amazing and funny and so beautiful. I know they're excited to go back to Disney.

Looks like, pp, that you've been given some great advice already. Good luck with your trip and your dd's upcoming surgery.

Brandi

 

[disneyworldmama]

Thank you all! Those shades are awesome, now I just have to decide which one! I really appreciate all of your help. This is the sweetest board!

 

[herodrx1]

My DD is 6 and has albinism. We have been to WDW & DL.

I agree with the other posters. Make sure to get a GAC when you first get to the park. It really made thing easier. It was nice not to have to get to a show tons early to get a front row seat.

We stopped every hour or so to put on more sunscreen. It really wasn't that big of a deal. Sometime we just sat down and took a break. Other times we reapplied while in line.

We always get a new hat when we get there. It makes it less of a struggle to get her to wear it. She never fights wearing her Minnie Mouse ear baseball cap!!

Even if your child doesn't see everything during the shows they will still has a ball. For example, during the Flights of Wonder show at AK we all loved the birds. Jillian on the other hand couldn't even see them. She thought the guy in the show was just too funny!! So while everyone else was getting their picture taken at the end with the birds and such Jillian had to get one with the guy. It always amazes me how well kids adapt to the situation.
It may be useful for you guys to take some binoculars to use during the shows.

You shouldn't have any trouble during the vacation. Disney does everything possible to make the trip fun for everyone!!!

 

[My2Angels]

Hi,

Does anyone know how to upload a picture of my girls?

 

[all4fun]

Hi,

Does anyone know how to upload a picture of my girls?

You have to have a webpage to upload from. If you don't have your own then photobucket will work. You upload your pictures there and then when you post, there is a small icon above the text box that a yellow box with what looks like a couple of mountains and the sun. It's the 4th one from the left... click on that and then enter the IMG code from photobucket.

ETA: Or actually, photobucket gives you the IMG code so you can just enter that w/out clicking on the "add image" icon above and it should work that way too.

hth.

 

[TinkerbellMama]

Hi. My husband has albinism too though not the same kind as your daughter. He has pigment in his hair and eyes but not his skin so he has to be careful in the sun as well.

I have a question for you folks with loved ones with albinism...
When I was a child, people frequently asked my mother if I had it, and I am wondering if there are any good sites which explain the difference between albinism and just EXTREME paleness/white hair/very light eyes, etc. I looked pretty much like a ghost as a child, and I am still VERY pale, but I do freckle a bit and have SOME pinkish color. I do not tan at all and was told it's because I don't have melanin except in spots (that's why I freckle???)...I am just fascinated with the whole issue. I did not have blonde hair as a young child. It was WHITE. It is now blonde. My eyes were sooooooooooooo light that I had a very hard time in bright sunlight. It is much better now, but as a child it was very difficult to see in those conditions. Thanks for any input.

 

[disneyworldmama]

I have a question for you folks with loved ones with albinism...
When I was a child, people frequently asked my mother if I had it, and I am wondering if there are any good sites which explain the difference between albinism and just EXTREME paleness/white hair/very light eyes, etc. I looked pretty much like a ghost as a child, and I am still VERY pale, but I do freckle a bit and have SOME pinkish color. I do not tan at all and was told it's because I don't have melanin except in spots (that's why I freckle???)...I am just fascinated with the whole issue. I did not have blonde hair as a young child. It was WHITE. It is now blonde. My eyes were sooooooooooooo light that I had a very hard time in bright sunlight. It is much better now, but as a child it was very difficult to see in those conditions. Thanks for any input.

Hi! Do you also have eye problems like nystagmus(moving back and forth) or strabismus? If not then I would say it is very likely you have hypopigmentation. Check out NOAH(national organization of albinism and hypopigmintation) there is lot of great info there and it might be able to help you out! To me, it really sounds like you have hypopigmentation. Sorry I can't give the URL b/c I don't have enough posts but you could google NOAH

HTH

 

[KJMAX1]

We used SunGuard made by RIT, and approved by the National Cancer Counsel to prevent UV/UA rays from entering your clothing. Basically your clothing has an SPF of 5, and when you wash your clothing with SunGuard it increases it to 35. I have washed all my kids, and our clothing in it, for our upcoming trip. You can buy it from the RIT website which was the cheapest. One wash lasts 20 washings worth even through Bleach.

 

[SueM in MN]

If you haven't been yet, follow the link in my signature to the disABILITIES Board. There is a disABILITIES FAQs thread near the top which has a section about Guest Assistance Cards (GACs).