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The National Information Centre for Metabolic Diseases |
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Galaxy Tribute Funds
Rhiannon was born on 19 December 1994. She was born with Non Ketotic Hyperglycinaemia, which was diagnosed within weeks of her birth. It is where there are large amounts of the amino acid glycine in her blood, urine and, particularly, her cerebrospinal fluid. This meant she was severely brain damaged. Life was hard – thankfully her 15 month old sister, Chloe, was oblivious to the pain and heartache being suffered at that time. Rhiannon’s life was a tough one in between seizures and screams, she never managed that smile that every parent searches for, or ever even saw us, but I know she knew we were there. Her existence itself was a battle. She had many that loved her dearly just for being her. She always smelt lovely, had beautiful soft skin, soft curly wispy hair and loved a cuddle! On 1st April 1996, aged just over 15 months, her battle with life came to an end. She passed away peacefully in my arms with the people who loved her around me. The staff at the hospital were great; they did all they could. Climb supported me at that time with the help of Sue Gorvett who, together with my family, helped me to carry on. It has now been 10 years since my baby flew away, as the Fleetwood Mac song she was named after says, “Taken by, taken by the sky”. It feels to right for me now to commence a Galaxy Tribute fund for Rhiannon, as a memorial to her life spent with us. It is my way of making sure she remains somewhere out there, up there, continuing to shine. Allison Boorer
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