Ellie-Mai's quilt   (Quilt Completed)
Quilted by: Linda
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.