Welcome to my blog. I read about so many parents who have the same questions and concerns that I had when my daughter was born almost 19 months ago. I know how incredibly hard it can be to deal with at first. I want to share my own personal experiences in having a child with albinism. I want to provide support and advice to new parents in those first few months. I hope to educate and answer questions that other parents or friends and family may have, but with the understanding that the information I provide is based on my experience with my child. What is true for Lyra isn't necessarily true for another child with albinism. I also want to provide factual information and resources to individuals who would like to learn more about albinism.
My daughter Lyra was born on May 11th 2006. She had white, almost clear hair at birth. Even though our older two kids were born with dark hair, we weren't terribly shocked since I had a brother and a niece who were both born with white hair. Albinism was suspected immediately by the doctors,but it wasn't until 2 days after birth when she was examined by the Pediatric Ophthalmologist, that the diagnosis was confirmed. Lyra had Oculocutaneous Albinism. It was unbelievably hard to deal with at first. During the first couple of weeks, there was always that little bit of hope, that maybe they were all wrong. I had endless thoughts and questions racing through my mind, yet I didn't want to tell anyone or talk about it. When we left the hospital, they gave us a packet of information about albinism. When we got home, I didn't want my daughter to accidentally see it, so I hid it in the back of my closet. The stress was overwhelming. I wanted to scream every time someone would say 'Wow, look at that white hair.' After a week or two of denial along with a serious case of postpartum depression, I finally accepted it… I had a sweet, beautiful, platinum blonde baby girl who couldn't have been more perfect.