Rachel and Scarlett's interview
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How did all start?
6months old Scarlett was diagnosed. I had no idea until then
Do you already have a diagnosis? How long did it take you to get it?
Almost immediately after the point that I noticed her eyes not changing colour. I only have 1 baby so didn't know.
For what medical specialties have you been treated? What has been the most useful specialty for your?
Early onset glaucoma now too . Off to moorfields eye hospital London soon .also have nystagmus. (Scarlett not me)
What has been the most useful thing for you so far?
My own research
What have been your biggest difficulties?
Worrying about her future and sight
How has your social and family environment reacted? Have your social or family relationships changed?
Yes .I have to constantly monitor and give extra care and consideration. And we live in the shadows .
What things have you stopped doing?
Going out in bright light
What do you think about the future?
Really worry for her sight
So far, which years have been the best years in your life? What have you done during them?
She is only 3 .But very bright. We did a sponsor walk for Aniridia network charity UK last month and raised over £1100
What would you like to do if you didn’t have your condition?
I would give her my eyes if I could
If you had to describe your life in a sentence, what would it be?
My life is a constant Worry.. She does not know any different
Finally, what advice would you give to a person in a similar situation?
Do your own research too
