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Happy Birthday to our warrior niece. Ellouise is only 1 of 9 with this condition in the world, but mum & dad say it way better than us. Please share and help spread awareness and if you can spare a pound or two, help support those who are supporting her. Ali's 100 mile ride to raise money for Unique - https://uk.virginmoneygiving.com/AlisonJane2 Told by her Mum & Dad, Emma and Jon..... "Our world has been turned upside down in the past 2 months as our youngest child (of 3) Ellouise, has been diagnosed with an extremely rare chromosome condition. So rare in fact, that there are only 9 registered cases in the world! Our journey started with some worries about Ellouise's development. We were totally unprepared 4 months later to be told that our daughter has this very rare chromosome condition (3p26.3-25.3 deletion). A condition with known complications including heart defects, kidney and bowel issues, speech problems, sight and hearing issues, feeding problems, cognitive development and degeneration issues to name just a few! Our only source of information and support has been the charity Unique, who have shared medical research and put us in touch with the other 8 families. Their support has been invaluable enabling us to reach out to others as we try to process this news and understand our millions of questions, hopes and fears and arm us with the critical information needed to push to get the relevant support and screening in place. We do not know what the future holds for Ellouise but with Unique's help we know we will fight for the support needed to enable Ellouise to thrive in her own unique way. Alison is our cycling mad Aunt, who is performing a wonderful act of love and kindness to help raise invaluable funds for Unique. To enable them to continue to support families and children like Ellouise face the uncertainties, lack of understanding and knowledge, and celebrate their achievements; as each and every chromosome child is amazingly Unique". Special thanks to Wayne Barrow who's wonderful video and channel allowed us to learn this song, and enjoy many more. We would not have been able to do this without his channel. - https://www.youtube.com/channel/UC3H_oW49V5nvdtSzMgoCh0w

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