Ava A's quilt   (Quilt Completed) |
Born: | 2014 |
Illness: | CHARGE Syndrome
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Theme: Fairies and Stars
Quilt delivered: 2nd Apr 2021 |
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Thank youSorry it doesn’t look like she is smiling, she has bilateral facial palsy but I promise she loves this beautiful quilt that has been made for her! Ava loves the texture and won’t stop looking at it. Happy mummy and happy Ava. Thankyou so much! it is something we will treasure forever
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Finished photos
Quilted by:
Tracey E
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Individual squares
Stitched by:
Alison Wells
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Submitted: Jul 2020
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Stitched by:
Alison Wells
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Submitted: Jul 2020
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Stitched by:
Ann
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Submitted: Aug 2020
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Stitched by:
Emma Edwards
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Submitted: Jun 2020
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Stitched by:
Emma Edwards
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Submitted: Jun 2020
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Stitched by:
Emma Edwards
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Submitted: Jun 2020
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Stitched by:
Gemma.H
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Submitted: Jun 2020
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Stitched by:
Jan G
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Submitted: Nov 2020
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Stitched by:
Janet T
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Submitted: Dec 2018
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Stitched by:
Jodie Balaam
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Submitted: Aug 2020
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Stitched by:
Liz
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Submitted: Jul 2020
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Stitched by:
Merete
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Submitted: Sep 2020
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Card
Stitched by: Kaz Bowen |
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BiographyAva was born and immediately something was wrong, it took 8 minutes to resuscitate her until she was taken to NICU. On day 2 she was rushed to GOSH for life saving treatment to unblock the nasal passages as babies are obligate nose breathers. When she was there she suffered a bowel perforation and ultimately sepsis and her body went into multiple organ failure. She pulled through after being on life support and we spent 9 months in hospital.
We found out her kidneys are failing after having had grade 5 reflux repaired and to this day she is on continual treatment to keep them functioning.
She is completely deaf, and has bi-lateral facial palsy so we never see her smile, just smiling with her eyes. She cannot walk, talk or eat and sometimes is oxygen dependant. As of today she has had 39 operations and due her 40th. She continually fights off infections for which she has a portacath in place ready for IV’s as she is so susceptible to sepsis. She has lots of gastric problems that are ongoing that we try our best to manage.
We have had long periods of stays at both GOSH and our local hospital. She has had times where she has had to go on TPN feeds to give her body a rest. She has been through sepsis 4 times. At times we've been told she would never make it and we are still unsure on the future.
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