Ellie-Mai's quilt    (Quilt Completed)

Thank you

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Finished photos

Individual squares

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).