Lily has been diagnosed with a condition called Ullrich Congenital Muscular Dystrophy, a disabling, progressive and life limiting disease for which there is no cure.	L As you can imagine this diagnosis has turned our lives upside down, and as her parents, we want to do the best for our precious little girl and give her everything she needs to make her life as long and as happy as possible.	She has amazing strength, determination and patience, and her cheeky ways and her beaming smile makes each day a joy. With the help of this website and through fundraising efforts

Lily has been diagnosed with a condition called Ullrich Congenital Muscular Dystrophy, a disabling, progressive and life limiting disease for which there is no cure. As you can imagine this diagnosis has turned our lives upside down, and as her parents, we want to do the best for our precious little girl and give her everything she needs to make her life as long and as happy as possible. Life is difficult for Lily, not that she would let you know it. She has amazing strength, determination and patience, and her cheeky ways and her beaming smile makes each day a joy. With the help of this website and through fundraising efforts, we aim to increase awareness of Lily's condition, to raise money in an effort to provide her with essential specialist equipment in and out of the home, and to help raise funds for research into her condition.