Recently, a friend’s little boy was featured in Target and Nordstom’s ads. He looked fantastic and it prompted lots of internet buzz in the Down Syndrome community with Noah’s Dad posting this. Then he went on to be featured on NBC’s Nightly News. I love seeing people with Down syndrome included in all types of media. It is validating for parents and brings awareness to the community at large. It is positive and encouraging.
It brings me back to a time before Ryan was modeling, when Ethan (and lots of other kids with DS) were modeling.
That’s Ethan, under the fort in the sandbox.
We answered our first casting call when Ethan was just a few months old. Guiding Light was casting an infant with DS to play the part of a newborn to be born with DS on the show. They picked a beautiful baby girl, but Ethan was selected by NDSS to be the face of their campaign for the year. From there, we were referred to the photographer that shot all the ads for Toys R Us. Our first casting call was in NYC. Modeling was a lot of fun. It gave me something else to focus on with Ethan other than an endless steam of doctor’s appointments and Early Intervention.
Ethan was featured in Toys R Us’ ‘Guide for Children with Disabilities’, and both of these shots were featured in the regular, Sunday sale flyer.
One evening, we recieved a call to have Ethan in Connecticut the next morning for a shoot with Ames Department Store. “All of his hair fell out” I said. “Um, that won’t work, uh…ok…thanks.” In a matter of weeks, Ethan had lost all of his hair due to Alopecia Universalis.
It was a sad and scary time. After leukemia, thyroid disorder, and a myriad of other things were ruled out, we received a diagnosis of alopecia. After some local doctors attempted to treat it with irritants and steroids, the Professor of Pediatric Dermatology at NYU shared with me that if it were his child, using the medications he was already on for varying disorders, he would leave the hairloss alone and ‘let it be’. That’s exactly what we have done.
Alopecia has presented challenges that I could not have predicted. Ethan has no eyebrows and eyelashes. It causes constant eye irritation. You need your eyebrows and eyelashes. Little, tiny ‘bushes’ of hair grow on Ethan’s head making it necessary for constant up keep to avoid the very bizarre look of these little ‘crops’ appearing. Sunscreening his head is a 9 month-a-year production, and very challenging on long beach days – Ethan hates hats.
Ethan is stared at frequently and ocassionally, openly made fun of. Don’t think I’ve been quiet on that account. People’s behavior is generally shameful and I am shameless. What has become such a non-issue to us, remains a stark and shocking look to other people. I have never seen him embarassed and he often chuckles at it. The best part of the whole thing is that Ethan loves the attention (good and bad) that his head garners.
Ethan continues to lead us on a winding, bumpy road. He may be bald, but he is *never* boring.