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LoveQuiltsUK - Bethany's quilt

Bethany's quilt    (Quilt Closed)

Illness: Cask gene mutation

Theme: Disney characters

Date opened: 4th Jul 2020
Date closed: 5th Jul 2020
Deadline: 26th Oct 2020

Photo of Bethany

Theme details

Disney characters - Favourites are Snow White and the dwarfs, Aladdin, lady and the tramp, Mulan, Mickey, Minnie, Donald and daisy,Frozen, princesses

Child Interests

Thanks to her parents Bethany loves Disney. She really lights up when Mickey Mouse comes on the TV and she loves the sights, sounds and atmosphere of Disney when we’ve been.
She can’t tell us but she does seem to prefer purple and pink stuff!


Bethany was born 10 days late and everything seemed fine, her head measured small at birth but within “normal” range.

We moved in October 2004 and Bethany had a 9 month check with the local health visitor who told us Bethany was delayed. Many tests and scans showed Bethany’s brain was small and her cerebellum was even smaller.
Her delay is severe, she is till very much like a baby, non-verbal and dependant on adults for all her needs.
Even more tests and scans over the years at Great Ormond Street finally found a diagnosis when Bethany was 12. CASK gene mutation, this gene is instrumental in brain development.
Bethany has had many struggles and been hospitalised on numerous occasions for different conditions as a result of CASK.

When she had chicken pox it developed into ITP and her platelet blood levels dropped dangerously low. She had dehydration, as it was very difficult to get enough fluid into her. She had a gastrostomy fitted in order to give her the right amount of fluids and meds and she was still eating mashed-up food.
She developed oesophagitis causing her to vomit blood and her gastro tube was changed to a jejunostomy tube. She is now nil-by-mouth.

The past couple of years has seen Bethany’s scoliosis become worse and she may need an op to correct it this year.


1.Own design Jasmine and Rajah - own designStitcher: Emma, Solihull, UK
In Progress

2.Own design Seven dwarfs Disney. Stitcher: Ailsa Kingdon, Romiley, UK
In Progress

3.Own design Lion King - own designStitcher: Chris, Hessle, UK
In Progress

4.LQ files Elsa in Heart by MereteStitcher: Val Gilbert, Coningsby , UK
In Progress

5.Simba LQ files Stitcher: Gemma McKnight, Southampton , England
In Progress

6.Paragon Disney Booklet Lady and the tramp eating spaghetti Stitcher: Jan G, Hull, UK

7.LQ files Mulan in fighting poseStitcher: Nicola, St Albans, UK

8.Paragon booklet Sports and Leisure Donald and Daisy bowling Stitcher: Heather, Littleborough, England
In Progress

9.Disney a punto croce Aladdin Stitcher: Jan S, Enid, Oklahoma, USA
In Progress

10.Love Quilts Files Frozen 2 Updated Version Stitcher: Alison Forsyth, Aberdeen , UK
In Progress

11.Mickey mouse playing the guitarStitcher: Sylvia, Clacton, England
In Progress

12.Label Stitcher: Jenny Elkington, Boston, UK

Squares received

Cross stitch square for Bethany's quilt
Stitched by: Jenny Elkington
Submitted: Jul 2020

Cross stitch square for Bethany's quilt
Stitched by: Jan G
Submitted: Jul 2020

Cross stitch square for Bethany's quilt
Stitched by: Nicola
Submitted: Jul 2020

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