roger batchelor

My beautiful Granddaughter Ellie Taylor born 16/6/2011 with SMA Type 1 SMA is a disease in which nerve cells in the spinal cord die off and muscles become gradually weaker. Ellie had SMA1, the most severe type. "She'll never sit up," says Yasmin my Daughter. Her husband Dale adds: "It comes from a mutation of a gene called the SMN gene. One in 40 people are carriers. Yaz and I both are. The consultant said he gives Ellie up to a year to live." Looking at the Ellie, lying on her sheepskin rug on the sofa, that is hard to believe. When I say "hello" to her she fixes my eyes with hers and a smile slowly blossoms in response to mine. "She's so sociable," says Yaz. "She loves people. She smiles at everyone." It is almost as if she makes up for her inability to move much with the intensity of her gaze. "She strokes your face in bed with little movements of her arm from her elbow, which she can manage," Yasmin says. Dale adds: "She likes holding small light toys," as he brandishes a tiny rubber snake before placing a flashing duck on her chest. Ellie smiles. Milk runs from an automatic feeder through a tiny tube inserted into her nose. "Ellie went into hospital with a cold recently,"The doctor said she would get over it but that she could deteriorate. She will probably die in the end from a chest infection. They said the family needed to think about end-of-life planning." Sadly Ellie lost her fight for life on 12/2/2012 all our love you will always be remembered.