If you haven’t noticed, I kind of love wearing hats. I feel like they’re the perfect accessory for any outfit. If you have board straight hair like me, a hat can add visual volume to your plain of vision, a hat trick if you will.
But there is another reason I love hats. My son *Peanut* has albinism. A more common known phrasing, he is albino. Albinism is a genetic condition effecting the skin, hair and eyes. Every human carries the gene that causes albinism. For most humans the gene lays dormant for their life span. But in rare cases, the gene is active. Both parents have to carry an active albinism gene and the gene has to mutate while in utero. It is a 1 in 17,000 chance of producing a child with albinism.
Most people, when they think albino, immediately assume the child is just pale and very blonde. They assume the child will grow out of it. The most common thing I’m told from strangers is “Oh my (insert relative) used to have hair like that, but it turned darker as he/she got older”. I then have to explain, this is a genetic disorder. His body doesn’t produce melanin. His condition causes his hair and eyelashes to be white. It causes his skin to be a noticeably pale color. And the most devastating and least known effect, it causes legal blindness.
When more inquisitive folks ask me, is he completely blind, I respond in more detail. Legal blindness is any type of blindness where the visual acuity is less than 200 and incurable. In other words 20/200 instead of 20/20 and surgery, glasses, contact or other basic visual aids are moot. The best way I can describe it is, do you remember the funhouses you would walk through at the fair. Where all the mirrors were distorted to make you look super tall, super short etc…. To him, everything looks further away, like backwards binoculars. This makes sight very difficult because once something is further away you lose a lot of details of what you’re actually looking at. On top of the visual distance issue, most individuals of albinism also struggle with eye shaking. Their eyes tremor back and forth with little to no control.
These multiple issues make it difficult if not impossible for a person with albinism to drive a car, play sports, and enjoy outside activities where sun exposure is high.
There are 3 must have items for a child with albinism. Sunglasses, sunblock and a good hat. We started Peanut out early with his hats. Even at 8 months old, when outside, he had a bucket hat on. As he got older and his personality began to develop, we confirmed he loves more stylish and flamboyant hats, as opposed to a basic ball cap.
For Halloween, he often chooses his costume based around the hat it requires. Some of his favorite costumes have been a police officer, Willy Wonka, a Mario Brother, and a Ringmaster from The Greatest Showman. His favorite hats are pageboy or cabby hats and top hats. He has been especially drawn to top hats for as long as I can remember.
When American Hat Maker reached out to me, I took a look at their products. Within a few moments I noticed their high quality top hats. They also carry sun deflecting hats for the warmer months and fedora’s for me. So this was a win win situation. I emailed AHM back and asked if I could receive 2 hats (1 for me, 1 for Peanut) and without hesitation, they agreed.
When his hat arrived, Peanut was ecstatic. He has worn many hats before but nothing this high quality. Once he got it on, he wears it everywhere he goes. I’m so thankful for a company like American Hat Maker. Because of their products he willingly and proudly displays his hat as a form of expression and pride. Yes, he has a disability but he refuses to let that define him or his life. He allows his top hat to speak for him. Now, when strangers approach him, they aren’t claiming “oh, my grandchild had that hair color when he was little.” Now they say “Wow dude! What a cool hat you’ve got!”
As a mother this is the victory I strive for. The victory I suspect all mothers strive for. To have their child truly be accepting and loving of themselves and accepted by others. I couldn’t receive this victory without companies like American Hat Maker. For us personally they turned the sunlight into shade in the most beautiful way.
Hugs, Kisses, and All That Jazz,