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LoveQuiltsUK - Amy W's quilt

Amy W's quilt    (Quilt Completed)

Born:August 2008
Illness: RTD(formally known as BVVL) riboflavin transporter deficiency

Theme: Teddies

Quilt delivered: 14th Jun 2018
Photo of Amy W

Thank you

Thank you so so much to each and everyone one of you that stitched Amy's quilt. She was so happy when she received it,and as you can see in the picture she wanted to look at every last detail she tries to stitch herself and it's an interest she has so this quilt made her year. Thank you again from both me and Amy for all your hard work,it's beautiful xx



Finished photos


Photo of Amy Ws quilt

Photo of Amy Ws quilt

Photo of Amy Ws quilt

Photo of Amy Ws quilt


Quilted by: Leanda

Individual squares

Cross stitch square for Amy W's quilt
Stitched by: Anne (+)
Submitted: Apr 2014

Cross stitch square for Amy W's quilt
Stitched by: Diana (+)
Submitted: Aug 2016

Cross stitch square for Amy W's quilt
Stitched by: Eileen (+)
Submitted: Apr 2015

Cross stitch square for Amy W's quilt
Stitched by: Jean (+)
Submitted: Apr 2015

Cross stitch square for Amy W's quilt
Stitched by: Jill Smith (+)
Submitted: Nov 2013

Cross stitch square for Amy W's quilt
Stitched by: Kaye S (+)
Submitted: Jun 2015

Cross stitch square for Amy W's quilt
Stitched by: Leanda Vickers (+)
Submitted: May 2018

Cross stitch square for Amy W's quilt
Stitched by: Lesley (+)
Submitted: Sep 2016

Cross stitch square for Amy W's quilt
Stitched by: Nicola (+)
Submitted: Sep 2014

Cross stitch square for Amy W's quilt
Stitched by: Rita Turner (+)
Submitted: Apr 2013

Cross stitch square for Amy W's quilt
Stitched by: Sue Andrews (+)
Submitted: Feb 2014

Cross stitch square for Amy W's quilt
Stitched by: Verity (+)
Submitted: Mar 2013


Card

Card for Amy W
Stitched by: Leanne

Biography

Amy was a born a beautiful healthy little girl. When she was 19 months old, I noticed she wouldn't eat solid food, wouldn't sleep much, was very unsteady and wasn't responding to sounds as well. She was having "temper tantrums" which we now know was actually panic attacks because of her breathing.

At 20 months old, she got rushed to hospital as she went blue and was struggling to breath, she was later discharged. She had another 3-4 emergency admissions and they transferred her to a specialist hospital. After MRI scans found vocal cord palsy, she was discharged again.

After a few months, finally got admitted in June 2010. July 2010 she had a cardiac arrest in hospital and was transferred to ICU. We was advised that it would be kinder to turn her life support off but they also gave us an option of long term ventilation via tracheostomy, there was only one option for me - so she was taken to surgery the following day. She was given a tracheostomy and gastrostomy.

Within a couple of weeks of being admitted to hospital she lost her hearing, speech, swallow, had facial palsy and couldn't move anything but her eyes. After a long 14 month stay in hospital and amazing suport from doctors, nurses, physio, support workers, play specialists - Amy walked out of hospital in 2011. Amy had a number of procedures in hospital, hundreds of blood tests, MRI, CT, x-rays, ultra sounds, lumber puncture, muscle biopsy, nerve tests, surgery for trachy, feeding tube, also had appendix out and bowel malrotation. But finally we could take her home and enjoy her for as long as we could.

Amy's condition is life limiting but they have now found a treatment that is working very well to keep her stabilised, which is high dose riboflavin. Initially we was given days for her to live, then months,then possibly to age of 5.

Amy will be 10 in August and has never been so well. She is still got a long way to go but has defied all doctors how well she is. She has now had a cochlear implant and is doing amazing with that but still only communicates through bsl. She goes to a mainstream school full time and is a very clever, happy, kind little girl. And most of all - my hero.


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