Parent of a Child with Albinism

I was browsing through the catalog I received yesterday and found that One Step Ahead has some new sun-protection items.

I am definitely going to get the outfit in the first picture below. We bought last year’s version, which was actually a one piece, but still similar. I’m pretty sure it is made out of the same material. It is VERY light weight and breathable. It doesn’t get hot and sweaty and sticky like t-shirts do during the hot summer months in our extreme Kansas humidity. One Step Ahead describes the clothing as “cool and comfortable, breathable, quick-drying, and antimicrobial. It is UPF 50+ protection.

UPF stands for Ultraviolet Protection Factor and is used to measure the protection factor of clothing like SPF is used to measure the protection factor of sunscreen and make-up.

The outfit in the second picture is really more of a wetsuit. It has the same UPF protection and is also salt, and chlorine resistant. They have a lot of other sun-protection clothing items in their Sun Smarties collection which I LOVE.

I also found a really neat outdoor sunshade/tent. That is the 3rd picture below.

You can find all of these online at One Step Ahead. Just do a search for “Sun Smarties” to find the clothing and “shade” to find the tent.
If you go to the One Step Ahead online store through I-Give, then 4% of your purchases is donated to NOAH and it doesn’t cost you anymore. You can get to the I-Give website from the link below.

NOAH I-Give

Lyra has been exceeding all of my expectations with her vision. She has seen things or done things I thought would never happen. Like all kids with albinism, Lyra has multiple eye problems that contribute to her overall low vision. (more…)

This is an older video, but it’s a good one to have on here for everyone to see. This is of one of Lyra’s first few sessions, either 3rd or 4th, with her Teacher of the Visually Impaired (TVI) and Occupational Therapist (OT). She is 5 and a half months old. Her TVI and OT always came together for Lyra’s sessions for about the first 6 weeks.

I have added quite a few more kids since I first wrote about this, so I am just reposting it and adding it to the video section.

Make video montages at www.OneTrueMedia.com

It looks like more and more mommies are getting the hang of this blogging business. Here is the blog of a mom, Cassandra, who has become a true friend of mine. She has 3 beautiful daughters, 2 of which have albinism, and she is due to have her 4th baby in October.

Ramblings of Casey

After working on this little project for over a month now, I am finally ready to present this to all of you:

Because of the unique needs of children with albinism, it can a very challenging task finding helpful products. I thought it would be nice if parents could find toys and books that are good for low-vision and also sun protection products all in one place. I created an Amazon store and then searched through the hundreds of thousands of products on Amazon.com to find the ones I thought were the best. My selections were based on my research, personal experience, and personal opinion. By no means is this the only place on the web where you can find these items, however it would take you long time to try to find all of these on your own. I will continue to add products over time, including increasing the number of toys for older children. In case you’re wondering, I earn 4% on all purchases made through my store. So this means I earn a whopping $4 for every $100.00 spent, so I don’t expect to get rich through this project. Any money we do earn will be used toward our trip to the upcoming NOAH conference in July.
Thanks for shopping!
Please email me if you have any questions or if you have any suggestions for products to add.

Click on the link below to visit my store:

Toys/Books/Products for Children with Albinism