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Trisomy 13 and my family

This is a discussion on Trisomy 13 and my family within the Special Needs Parenting forums, part of the Developmental & Parenting Stages category; Hello all i have a little girl called macy who has a terminal illness called trisomy 13/patous syndrome. She has ...

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Old August 1st, 2007, 11:12 AM
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Default Trisomy 13 and my family
Hello all i have a little girl called macy who has a terminal illness called trisomy 13/patous syndrome. She has many problems but we love her so much.
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Old August 1st, 2007, 11:14 AM
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Oh she looks a lovely like girl.

It would be great if you could gives us some info on her Illness.

Lyn xxx
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Old August 1st, 2007, 11:20 AM
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She does look gorgeous, and like Lyn i would be keen to hear more.

Karolynx
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Old August 1st, 2007, 11:30 AM
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Right were do i start. Trisomy 13 is based in the illnesses along with downs however babies with trisomy 13 do not usually life to birth let alone 1st birthday. As soon as she was concieved it happened she has a extra 13 chomosone. She has serious heart condition, lung disease, deafness and blind. Extra little finger, enlarged Kidney, brain abnormailties and 2 hernias. I am very lucky to have macy still and i treasure every day with her.
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Old August 1st, 2007, 11:39 AM
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Oh How heart rendering, I cant begin to understand how you feel.

But she sounds like a little fighter.

What is the Macy fund if you dont mind me asking.

Lyn xxxxx
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Old August 1st, 2007, 11:46 AM
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It was something i set up to raise funds for the hospice she goes to we had a event in May and raised £5000 for the hospice and the scbu that macy was born at.
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Old August 1st, 2007, 11:57 AM
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Oh thats lovely.

Which hospice does she go to, and how often if you dont mind me asking. sorry if im being nosey.

I have work most of my life with child who have disabilities, stopped working though when i had Izobele.

Lyn xxxxx
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Old August 1st, 2007, 12:00 PM
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No hun ask away. Macy goes to Rainbows in leicester and is granted 14 days a yr.
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Old August 1st, 2007, 01:23 PM
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my heart goes out to you and your family having to deal with such a heartbreaking illness.
she is absolutely gorgeous and i bet you are so proud of her. how old is she?
its great that people like you are informing others about these illnesss and raising awareness and money to help. if there is any thing we can help with i'm sure every one on here will put there all into it.

take care

karen
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Old August 1st, 2007, 01:58 PM
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She's beautiful and such a little fighter, I'd never heard of the condition so I'm of to look on the internet.

Macy looks like she had a great holiday, where did you take her?

Claire
xxx
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