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LoveQuiltsUK - Ellie-Mai's quilt

Ellie-Mai's quilt    (Quilt Completed)

Born:2014
Illness: Temple baraister syndrome

Theme: Princesses (Unicorn on label?)

Quilt delivered: 17th Jul 2022
Photo of Ellie-Mai

Thank you

.



Finished photos


Photo of Ellie-Mais quilt

Photo of Ellie-Mais quilt


Quilted by: Linda

Individual squares

Cross stitch square for Ellie-Mai's quilt
Stitched by: Angie (+)
Submitted: Aug 2021

Cross stitch square for Ellie-Mai's quilt
Stitched by: DRGP Group (+)
Submitted: Dec 2020

Cross stitch square for Ellie-Mai's quilt
Stitched by: EE(Beth)Filmer (+)
Submitted: Nov 2021

Cross stitch square for Ellie-Mai's quilt
Stitched by: Elaina (+)
Submitted: Nov 2020

Cross stitch square for Ellie-Mai's quilt
Stitched by: Heather C (+)
Submitted: Jun 2021

Cross stitch square for Ellie-Mai's quilt
Stitched by: Jan G (+)
Submitted: Apr 2022

Cross stitch square for Ellie-Mai's quilt
Stitched by: Kathryn B (+)
Submitted: Nov 2021

Cross stitch square for Ellie-Mai's quilt
Stitched by: Kaye S (+)
Submitted: May 2021

Cross stitch square for Ellie-Mai's quilt
Stitched by: Lesley (+)
Submitted: Oct 2021

Cross stitch square for Ellie-Mai's quilt
Stitched by: Liz (+)
Submitted: Jun 2021

Cross stitch square for Ellie-Mai's quilt
Stitched by: Nicola (+)
Submitted: Jan 2021

Cross stitch square for Ellie-Mai's quilt
Stitched by: Ruth Horn (+)
Submitted: Nov 2020



Biography

Related epileptic encephalopathy is an ultra-rare neurological disorder caused by a mutation in the KCNH1gene. Ellie-mai was born with TBS and we noticed she didn't hit any of her milestones. At 3 weeks old she had her first fit and we knew something wasn't right. Along the road we have had many different doctors telling us they had no idea what was wrong. They decided to put her into a gene testing programme where they took her blood as well as ours and 2 years later we got her diagnosis.

Ellie is non-verbal and uses a wheelchair. She suffers with now 5 different types of epilepsy and is likely to get all of them. She has gingival overgrowth of her gums which means most of her teeth are covered by gums. We have had many struggles over the years having to move house to suit her needs and fight to even get her a bed that is suitable.

Ellie is 7 now and such a happy little girl. However she is only 9 to 12 months mentally and that will never change. Her diagnosis is very rare. She is 1 of 14 in the world who have it and only 2 in the UK. She has facial and periodontal abnormalities,feeding difficultly. encephalopathy (widespread disease of the brain that results in altered structure and function).


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