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Q+A with Hailey Brown - shares her insight as a Mum of 2 girls with a rare genetic condition.

by Lana Arnold on September 26, 2020

 

Hailey Brown, Mumma of 3 tells us a bit about her family and the affect of the rare genetic condition albinism has had on her daughters and their eyesight.  

Tell us a bit about yourself and your family?
We are a family of 5, Myself Hailey, Husband Chayd, 8 year old daughter
Arliyah, 6 year old son Reagan and 4 year old daughter Mackenzie.

Both of our daughters have Albinism which is a genetic condition that leaves them not only legally blind but also with severe sun sensitives and Nystagmus which is the invulnerability movement of the eyes so the girls eyes never stop moving.

Albinism is Characterised by a lack of pigment in the hair, eyes and skin. To have albinism both of your parents need to be a carrier of the gene and even
then you only have a 1 in 4 chance of having albinism.

There are only about 1000 people in Australia that have albinism.

When did you realise your Child might need glasses?
Our eldest Arliyah needed glasses form when she was 6 months old. So when
we had Mackenzie and realised she had albinism she also needed glasses from
6 months old.

Glasses do not in any way correct the vision in a person with albinism, however they do magnify the small amount they can see. Being legally blind does not mean they have no vision at all it just means that there vision loss is so sever they are legally classed as blind, however they can see things that are super close, they can see shapes and colours ect everything is just very blurry and out of focus for them. Glasses can also help try to keep their eyes aligned, due to their albinism and nystagmus their eyes are never straight.



What changes have you noticed since your child has been wearing
glasses?
Both the girls love there glasses, Mackenzie loves her augie eyewear glasses
especially her pink sparkle ones, I think having them so bright and
colourful makes them so much more fun to wear!


What's your best mum hack?
Hmm, I probably don’t have any hacks as such but I will say knowledge is
power and the more you can can learn about the world around us the more
you can empower your children to become the best versions of themselves.

We agree Hailey! 

Check out Hailey new business Albinism Warriors  a one stop shop for all your Sun needs, hats, swimwear and suncream, follow Albinism Warriors on Facebook 

Lana x