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The National Information Centre for Metabolic Diseases |
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Galaxy Tribute Funds
We have decided to start a Galaxy Tribute Fund as a memorial to our beautiful daughter Anna who died aged two years and two months of bronchopneumonia secondary to Tay Sachs disease. Anna was sweet-natured and tolerant in the face of her many difficulties. During the final few months of her life her only voluntary movements were lifting and turning her head slightly and changes in facial expression. Her eyesight was poor. She was fed by nasogastric tube as she was unable to swallow and the upper lobe of her right lung was permanently congested. Despite these things Anna still managed to find enjoyment in life. She loved music and being sung to, the sound of people talking, cuddles and walks in her buggy looking up at her favourite leaves. She was always happiest when we were at home in familiar surroundings and she was able to sleep in her own comfy cot at night. She communicated her likes (and dislikes!) through a wide range of subtle changes in her facial expression. Rarely, she would actually cry or smile, which must have taken a huge amount of effort. Our brave little girl managed a smile at her musical mobile just a few days before she died. We hope that this Galaxy Tribute Fund will help other brave children with metabolic disease and their families, and serve as a fitting memorial to our precious Anna. Sinead Summers and Nic Driver
Nick Driver and Sinead Summers receiving Anna's Star.
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