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Robin Emerson

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Robin Emerson is father to Jorja Emerson, who was born in 2016 with a rare chromosome abnormality, with her condition deteriorating to such a degree that Robin was told that he’d h...

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What is a chromosome admormality?

So a chromosome abnormality can be lots of different things. It can be that you're missing part of a chromosome, or it can be things like a duplication of a chromosome, and basically there's two ways that that can happen. It's usually genetic passed and dying. Or in Georgia's case, it can be just totally one of those things that we don't know of when the baby's being formed in the womb. Something has happened that has resulted in some sort of chromosome abnormality.

Who is Jorja?

So George is my daughter. She's seven years old today, born in 2016. I suppose you could say. George is also my inspiration, everything that I do. She's a happy 7-year-old child. She's nonverbal, but she has her own ways of communicating and telling me what she wants and what she needs. She's also unable to walk, but she can get herself around and manages to get herself from A to B. But yes, George. She's everything to me and my world.

What is Jorja's illness?

So Georgia's illnesses, she's got a really rare chromosome deletion called a one Q 43, Q 44, and from that she's got a severe form of epilepsy. So with her chromosome deletion, she has lots of other minor things that likes of her development. Developmental delay is behind. She's got low muscle tone in her stomach, so she finds it hard to be able to sit up and do things like that. Although she's developed all that forward Sno, she's got microcephaly, which means a smaller head the much you should have. But obviously the main issue with George's chromosome deletion is her epilepsy.

How did it feel when Jorja was born?

When did Jorja have her first seizure?