Lottie's life Fund
Donation protected
Lottie is a beautiful, loving little girl who loves babies, animals and spending time with her big brother Alfie. She loves to play, sing and dance despite not being able to walk. She has a beautiful smile, laugh and sense of humour and she brings huge joy to all of our lives.
Lottie has never been able to walk independently but she has not let this hold her back and has worked really hard to walk a few steps with the help of a walker. She uses her scuttle bug and crawls and bunny hops her way around to try and keep up with her friends. It was suggested that she may have a form of ataxic cerebal palsy as she is unable to balance and is hyper mobile so she received regular physiotherapy to try and get her walking on her own.
However, last month our world came crashing down when after further tests we were told that Lottie has a terminal, rare genetic disease called MLD (metachromatic leukodystrophy) . MLD is a progressive disease which takes away a child's ability to walk, talk, move, feed themselves, see and hear. As this cruel disease rages through our beautiful daughter's little body we will only be able to watch as these things are taken from her one by one before she starts to suffer seizures and lose her little life. Most children with MLD do not live over 5 years old. Apart from living through this ordeal, the worst thing will be telling our son Alfie and watching him go through this pain too. How do you tell your 9 year old son that he will lose the person he loves the most in the whole world?
We are determined to make the most of the time we have left and make it as happy as possible for Lottie and Alfie. We would love to take them to Disneyland so Lottie can meet her favourite princess Elsa. This is something that Alfie has always said he would do for Lottie when he turned 18 as he would be old enough to take her on his own. Sadly, he will never be able to do this but we hope we can still go together as a family and make some magical memories for both of them. We would like to do this as soon as possible before she becomes too weak to travel as we have been told time is always uncertain with this awful disease and things can change very quickly. We would also like to spend as much time as possible caring for Lottie ourselves at home so we can be together as a family for as long as possible.
Thank you for taking the time to read this and for all of your support.
Love Paula, Jim, Alfie and Lottie xxx
Lottie has never been able to walk independently but she has not let this hold her back and has worked really hard to walk a few steps with the help of a walker. She uses her scuttle bug and crawls and bunny hops her way around to try and keep up with her friends. It was suggested that she may have a form of ataxic cerebal palsy as she is unable to balance and is hyper mobile so she received regular physiotherapy to try and get her walking on her own.
However, last month our world came crashing down when after further tests we were told that Lottie has a terminal, rare genetic disease called MLD (metachromatic leukodystrophy) . MLD is a progressive disease which takes away a child's ability to walk, talk, move, feed themselves, see and hear. As this cruel disease rages through our beautiful daughter's little body we will only be able to watch as these things are taken from her one by one before she starts to suffer seizures and lose her little life. Most children with MLD do not live over 5 years old. Apart from living through this ordeal, the worst thing will be telling our son Alfie and watching him go through this pain too. How do you tell your 9 year old son that he will lose the person he loves the most in the whole world?
We are determined to make the most of the time we have left and make it as happy as possible for Lottie and Alfie. We would love to take them to Disneyland so Lottie can meet her favourite princess Elsa. This is something that Alfie has always said he would do for Lottie when he turned 18 as he would be old enough to take her on his own. Sadly, he will never be able to do this but we hope we can still go together as a family and make some magical memories for both of them. We would like to do this as soon as possible before she becomes too weak to travel as we have been told time is always uncertain with this awful disease and things can change very quickly. We would also like to spend as much time as possible caring for Lottie ourselves at home so we can be together as a family for as long as possible.
Thank you for taking the time to read this and for all of your support.
Love Paula, Jim, Alfie and Lottie xxx
Organizer
Paula Veysey
Organizer
