Frankie

Frankie was born in May of 2006, greeted by myself, my husband and big sister Lizzy. He was born with a little bit of white hair and white eyebrows. Being quite light ourselves, we did not think too much of it.
Having a daughter and a son was a great feeling, "one of each". Frankie was an easy baby, not really crying too much while waiting for his bottle to warm up! While holding him, I felt as though he were more vulnerable than my daughter, but did not know why.
It was not until he was about 4 month old that I started to notice his poor vision. I had read that babies could track objects by this age, and noticed he could not. A stuffed animal fell towards his face and he did not even blink! We took him to my daughter's eye doctor, and a diagnosis of ocular cutaneous albinism was given. I watched as he did not respond to any flashlights, objects, etc. We were told he knew us by our voices, not our faces!
I know I was in shock as I told family and friends that first day, just reciting what I had been told by the doctor. This shock lasted a while, maybe a month or 2. I was sad about it, but more in shock, looking back on it. I was told he would see better as he got older, but as a mother of a little baby, I was just upset by the fact that he was almost blind! Looking ahead was not something I could do at that point.
In time my shock turned to sadness, one I had not ever experience before. He did start to see more and respond to visual cues, but I still could not get over the fact that he would never see as well as others. That he would be different in some way. It took me about a year to feel ok again and celebrate his albinism. It is just now that I can write about it and tell others about his condition without feeling sad.
People say that going though difficult things makes you stronger. I can't say that for all people, but somehow this experience has made me stronger. I am now happy that Frankie has white hair and eyebrows. I would not change a thing about him. He has brought us all so much joy! He and his big sister Lizzy love each other so and it is so heartwarming to watch them together.

Welcome to my blog

Hello,

I am a mom of a child with albinism. Albinism is a genetic condition effecting a person's vision, skin and hair. Because of a lack of pigment, children are born with white hair and skin, and poor vision.

I thought I would start this blog to hopefully connect and help others who have albinism or children with albinism. I will try to update with information, thoughts, support
and some of my story with a child with albinism.


Thank you for reading!