Meet April

April Armstrong is the inspiration behind our new April Stripe.  April was born with albinism - a rare inherited genetic condition that reduces the amount of melanin pigment formed in the hair, skin and eyes.  Albinism occurs in all racial and ethnic groups.  Additionally, most people with albinism experience varying degrees of visual impairment.  Approximately 1 in 18-20,000 people are born with albinism in the US.  Lauren, April's mom, kindly shared their journey with us...

April is an extremely spirited, spunky, funny and smart little girl. She is very girly, she loves all things pink and glittery (just like her mama) and is obsessed with Disney princesses and Frozen. She loves to sing, dance and paint.

We found out April had albinism when she was four months old. She was born with sparkling white hair that all the doctors and nurses in the hospital marveled over. Since I have blonde hair, everyone just thought she was extra blonde. We noticed her eyes moving but as first time parents thought that was normal and something she would grow out of. To be sure we brought her to a pediatric ophthalmologist at 4 months old and he was the one who gave us the diagnosis. To be honest it was an extremely scary and dark time in my life. We were already having a tough time adjusting to life with a fussy newborn that did not want to sleep and then we found out she has a rare genetic condition. The eye doctor mentioned things like "legally blind", not being able to drive and looking into genetic counseling if we plan on having more children.

At my lowest point, I contacted NOAH.  They put me in touch with other parents who have children with albinism and the fog started lifting. I also started searching for kids and people with albinism on instagram and seeing them live completely normal lives also helped a lot. Through NOAH I connected with 4 other local families (one of whom lives down the street from me!) and we started getting together for monthly play dates.  That connection provided me with the greatest support and relief.  We were in this together and April would have lifelong friends with albinism who live close by.

The condition is very rare but I now know of so many kids of different ages and adults who live in my area and also thanks to social media I have connected with so many families around the country and even the world. I developed a very close friendship with another mom who has a daughter Aprils' age with albinism in Denver, Colorado and talk almost every day. Last summer we traveled to Denver to meet her daughter and family as well as other families in their local albinism community.  It was a really special trip we hope to do again some day. 

I think parenting a child with albinism is different for everyone. There is a big spectrum when it comes to vision impairment. Some kids are learning braille and using canes and benefit from a lot of extra help and therapy. For everyone there is always the extra worry about sun exposure and making sure the kids are properly protected since they are so much more susceptible to skin cancer. At times it can be overwhelming for me, and not knowing how exactly she sees and how it affects her is my biggest challenge.

April was a more challenging baby and toddler (still is!) and it was hard not knowing if her temperament had something to do with her vision or light sensitivity but as she gets older and I encounter more people with babies and kids with albinism I feel like her sensitivities and strong will is just who she is and will serve her well later in life!

She does struggle with depth perception and it was hard when she started to become more mobile to see her navigate around unfamiliar places, but that has improved so much as she has gotten older with more exposure. For the most part raising a child with albinism is not much different and they should be raised with a lot of love, treated no different and encouraged to do everything their peers do.

 My hope is that we can bring positive awareness to albinism, since it is a very misunderstood condition. I hope others will raise their children to be kind and accepting of others with differences. Maybe their friend has hair or eye color they have never seen before, maybe their eyes move, maybe they see things a little differently but that has nothing to do with the person they are on the inside. I hope this is encouraging to moms of children with albinism, especially new moms because I was there and I understand what you are going through and it really is going to be okay. Your child will go on to live a completely normal life, maybe even an exceptional life and just might make you a better mom and person you ever thought you could be.