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The National Information Centre for Metabolic Diseases |
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Galaxy Tribute Funds
23 January 1998 – 26 February 2005 We lost our beautiful daughter, Freya, suddenly and unexpectedly in her sleep, in February 2005. Freya had Niemann Pick Disease Type C. She was totally adored; the baby of our family, arriving just five minutes behind her twin sister, Orenda! Freya was such a happy, smiley girl and so brave too: no matter what life threw at her, she never felt sorry for herself. She was very loving, a little giggler, and feisty too – she could be a mischievous little imp, but always funny; like when she would pucker up her lips in a cheeky pout! Our darling daughter loved magical things, like fairies and the stars, and chocolate – but above all she loved life. She was a ‘Peter Pan Girl’, staying younger than her years, and now she will always be young and we like to think she has joined the magical folk or her inner beauty shines like a star. We have started a Galaxy Tribute Fund in Freya’s name in order that something positive may come out of losing our precious Freya. Our hope is that one day an answer can be found to combat these silent, cruel metabolic diseases which attack children’s minds and bodies, and rob them of their lives. We hope a time will come when families won’t have to go through the heartbreak and pain which ours is going through now. Gaye Davison Hulme (Mother), Derek Davison-Hulme (Father) and family.
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