LIVING WITH LAURA - THE STORY

 Hi there! My name is Angie, I'm the mother of 3 incredible kids Jenna, Laura and Jason. All three children were born healthy and well, Laura was born August '87 and the moment I saw those chubby cheeks and beautiful brown eyes I fell in love. She spent the first part of her life happy and full of life, she loved to dance and sing and was the funniest and most vibrant and caring girl you could ever meet. Around the age of 16 however we started to notice changes in her and after a short time of being misdiagnosed with depression I realised there was something else and more worrying going on. Due to my job as a community carer, I had very limited time to care for her as well as caring for my 8 year old son. I was at my wits end. By 19 Laura could no longer write and her behaviour became more erratic. After an MRI scan I was told it could be one of two things, MS or Leukodystrophy. I had little experience with Leukodystrophy so after reading that it was incurable and would inevitably lead to death my heart broke. My beautiful daughter was diagnosed with Metachromatic Leukodystrophy and my life fell apart, I have provided 24/7 care for her now for over 8 years and it's devastating. Over these years I have watched my vibrant, funny, beautiful and loving daughter decline so much she can no longer walk, talk or eat by herself. Its heartbreaking and so cruel knowing  that I cannot stop the decline, there is no cure but I shall continue to love and cherish her every day until the dreaded day comes when she fades away. I'm here because I want to raise enough to take her away, so she can feel the sun on her body and feel clear blue water on her body before it's too late. Water is the only way she can relax, she loves to float and gives relief to her very stiff twisted limbs. Im hoping also to get her a portable spa/jaccuzzi and put it inside then she can access it everyday, A one hour session in a hydropool with a physio cost £200!! so fundraising for her own one is a cheaper option.
Thank you for reading my story, I will be updating as often as possible, you dont have to donate but please remember the illness and help us to raise awareness because it is a very mis diagnosed disease, please have a look at the these sites . www.mldsupportuk.org.uk
www.mldfoundation.org  www.mpssociety.org.uk


Metachromatic   Leukodystrophy (MLD) is a rare genetic disease of the brain, scientists etc have been working on gene replacement therapy, stem cell is also an option if the disease is in the early stages but as many, including my Laura, are mis diagnosed, for many years sometimes, suffers like my girl are too far advanced in the disease for it to be of any benefit.