Welcoming a new child into your home is an adjustment, and when that child has a unique health condition, the opportunities to learn and grow are plenty. Our friend, and mother of four, Patricia Williams is a parent who’s very familiar with the flexibility needed for family life. In addition to having her own clothing line, she manages a very full home. She has four rowdy boys, two of which were born with albinism, a rare condition where the body doesn’t product melanin. Patricia is an advocate for education surrounding albinism and she was kind enough to sit with us and answer a few basic questions that will expand your knowledge about this extremely rare condition.
O | What is albinism and what are some characteristics associated with it? How common is it?
P | Albinism is an inherited condition present at birth, in which the body does not produce melanin, causing there to be a lack of pigment to the skin, hair, and eyes. There are various types of albinism all of which involve lack of pigment to different degrees, and it affects approximately 1 in 17,000. The most common form is Oculocutaneous albinism (affecting skin, hair and eyes). There is also Ocular albinism which primarily affects the eyes, while the skin and hair show normal coloration.
O | How do you communicate with your children about albinism? Is there any awareness on their side about it?
P | We have always been very open with our kids about albinism and what it means, and we've encouraged them to tell others if people ask about Redd's hair or skin color. Redd currently goes to school at the Blind Children's Center and they have been a significant factor in helping Redd understand his albinism and how to be vocal and advocate his needs while he navigates not only through school, but also through life.
O | What are some struggles you’ve had with your children? Health issues (I know you mentioned vision is there anything else?)
P | I like to refer to our life with albinism as "life adjustments" instead of struggles. When Redd was younger, he refused to wear sunglasses and because of his sensitivity to sun light, we had to do a lot of beaches and playgrounds at dawn or at sundown, so he could play comfortably. This became fun for us because we usually were the only ones there. Now that he’s older, he knows to put on his hat, sunglasses and sunscreen before going outside and is good about reminding us if we forget. We carry a lot of sunscreen, and multiple sunglasses and hats in our car so we are always prepared for him to be outside.
The only health issue associated with albinism is that many are legally blind. When Redd was 3 months old, our optometrist told me he would most likely be legally blind and unable to get his drivers license. I remember crying all the way out to the parking lot and the entire drive home. The majority of those with albinism are born with nystagmus, photophobia, and strabismus. Redd was born with all three. Nystagmus is an involuntary movement of the eyes back and forth (something we noticed when he was a newborn). It causes abnormal connections in the nerves from the retina to the brain, which reduces depth perception and prevents their eyes from moving together. Because of this, it can not be corrected with any form of surgery. Photophobia is sensitivity to light, and Strabismus is crossed eyes. When Redd was almost 4, we decided to have the surgery to correct his strabismus and saw a significant improvement immediately afterwards.
Now that Redd is 5 and understands the importance of wearing his sunglasses, hat and sunscreen, we have been able to live our lives just as any other families do. We love going to parks and museums and indoor playgrounds. We love traveling and taking our boys on long road trips. We recently put Redd in swimming lessons and now he is super comfortable diving in to the water and swimming on his own.
O | Is there anything specific you’d like to share with our readers?
P | If you know my boys at all, you know they are very rowdy and active and Redd definitely knows how to keep up and hold his own. We have tried our best to raise Redd to be just like any of our other boys (and we will raise Rockwell to be the same), not limiting them in any way or discouraging them from things that would be a little frightening. We had
O | Any advice you’d give mamas who have children who are a little different or who have children with albinism?
P | I think the best thing any parent can give their children is confidence. If you have a child who looks a little different, or has special needs, or sometimes just doesn't fit in with the crowd...we have to provide them with tools in order to withstand how cruel the world can be. We have already dealt with our fair share of kids being unkind to Redd while at a playground and we know it will continue to happen throughout his childhood (and possibly adulthood). Kids can be so honest in such an innocent, yet totally hurtful way and we are trying our best to use those opportunities to educate them about albinism and to explain why Redd's eyes move back and forth and why his hair is so white. I've alway said the best defense we can give to Redd is to teach him how to be confident and give him the right things to say when he hears people making fun of him. My husband has always said the next best defense is to give him kung-fu lessons.
Follow Patricia @blackiboys
2 comments
Thanks for posting this interview. My fourth child has albinism. I learned a lot from NOAH (https://www.albinism.org/), a national organization with lots of local chapters. I read their resources and found the info invaluable. I can’t recommend it highly enough.
I agree with Patricia that nurturing confidence is key. It is true that my son cannot drive a car , but he has traveled through Europe on his own, run multiple marathons – including Boston – and is currently earning his PhD.
Your story could not have been sent to me at a better time! Just last week, my daughter was diagnosed with a mild form of albinism. We were pretty surprised by this news. She’s 18 months old and it was her pediatric ophthalmologist who discovered that she is albino. We are all very pale in my family and her brother also has blonde hair and blue eyes, so we didn’t really realize. I am trying to find an albinism community so that she can be raised proud of her self identity and also so I can learn how to be the best advocate for her. Thanks for sharing your story!