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Not long after birth my beautiful baby daughter was diagnosed with Prader-Willi syndrome. She didn't behave like a 'normal' baby, and not long after birth tests were underway. The day I found out my baby girl had a life long disability was the day my heart shattered and my world collapsed. This syndrome has a number of issues, that we & Rosie will have to deal with. For now she has to be tube fed, doesn't make much noise, cry, move around much, it will take much longer for her to meet her baby milestones. She has a failure to thrive and low muscle tone, as she grows this will change, and not for the better. These issues and the following issues, are only a few of what she will have to encounter . She will always have low muscle tone, she will have learning disabilities, she will not like change and might struggle in new situations, disturbed sleep patterns, but the BIGGEST issue is she will ALWAYS feel hungry, imagine always FEELING HUNGRY! I can't bear the thought of this. This often leads to temper tantrums, outbursts and dangerous eating habits, they'll source food from wherever they can. Our kitchen cupboards and fridge will need to be locked. ALWAYS FEELING HUNGRY, it's just not fair!! Our biggest hope for Rosie's future is RESEARCH, RESEARCH, RESEARCH in the hope that there will be some form of medication to help the hunger and other issues. (Appetite suppressors do not work, as the part of the brain which tells us we are full is missing, so there is no where to send the message too!!)  Research costs money and this is why I am desperate to raise as much money as we can to help fund vital research. Please, please I am asking you with my everything if you can sponsor/ donate to this cause I will be eternally grateful. Thank you so much.

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