About Alana and Us
My name is Toni and I am Alana's mother. Alana was born with Oculocutaneous Albinism (Type 1A). Alana is a beautiful 4 year old girl and she has a brother, Scott, who is 7 years old. Neither my husband, David, nor I, ever suspected that we were carriers of the albinism genes before Alana was born as not only did Scott, David and I show no obvious signs of albinism but neither did anybody in either of our families (as is so very often the case).
This site will hopefully help to educate people a little about albinism and be one resource to parents of children who are newly-diagnosed with albinism as it is a very misunderstood condition by most people. While the diagnosis of albinism can be a very difficult experience for those who are not familiar with the condition, perhaps the most frustrating aspect is the misinformation and ignorance of other people, some of whom can be insensitive, cruel or rude.
If just one person gains a positive perspective through this site or just one person can learn about albinism and treat people with albinism with more understanding and equality because of what they have read here, I will be very satisfied.
Albinism is just a small part of who Alana is and we, personally, prefer to say that she 'has albinism' as opposed to calling her 'an albino'. The term albino can be more implied as a label in our view, as opposed to a condition she has. If you don't understand what I mean, ask someone with asthma if they like being referred to as 'the asthmatic' or to someone who has bipolar disorder prefers to be called a 'manic-depressive'. We are all people first, our conditions we suffer from are only small parts of who we are. So you understand if someone called you 'the albino' you could feel that they were being a bit derogatory rather than 'John, the person who has albinism'. We also like to say that our family has albinism not just Alana as we deal with the condition and its implications together as a family. Basic terminology it may be but attitude plays a big part in learning to live with albinism.
Our story is very similar to many across the world who have albinism in their family and despite geographical and cultural differences we share very similar experiences. So, please read on and learn a little about our story.
We live in the foothills
of Adelaide, South Australia.
beautiful place to live!