Lara’s Shining Light Trust

Thanks for taking the time to visit our fundraising page. Simon and I, are the very proud parents of a beautiful little girl whose smile and giggle lights up our world every single day and nothing will ever change that. Our lovely Lara who is now 16 months was recently diagnosed as having a incurable genetic neurological disorder within the Rett syndrome spectrum. It is a devastating cruel disorder that causes physical disabilities that could slowly rob our lovely Lara of living a ‘normal’ life. The last 7/8 months watching her having to endure over 30 appointments, procedures, scans, infusions and tests at 3 different hospitals has broken our hearts a thousands times over. It has been the hardest, most difficult and desperate time of our lives. But our sweet spirited, amazingly determined and brave lovely Lara has shown us the way through it all. She has shown far greater strength and resilience than I've ever thought was possible. She is our absolute hero, we are so very proud of her and she inspires us daily to be better people and better parents. We’ve now reached the point in this process where we are ready to acknowledge that our lovely Lara’s life will follow a different path. We may never fully accept it, but we are now embracing this new community we find ourselves in. Yes, we wish things were different, but we are not sorry, or angry anymore. We are still simply proud parents of a beautiful little girl and our lovely Lara deserves the very best parents who are positive and happy, who will endlessly fight for her and give her a voice whilst she courageously battles through the syndromes 4 stages. We are now fully prepared and armed to face and fight each one head on. What is Rett syndrome? Rett syndrome is a rare genetic neurological and developmental disorder that affects the way the brain develops, causing a progressive loss of motor skills and speech. This disorder primarily affects girls. Most babies with Rett syndrome seem to develop normally for the first 6 to 18 months of age, and then lose skills they previously had — such as the ability to crawl, walk, communicate or use their hands. A tiny mutation to a single gene will condemned Lara to a life of disabilities and dependence. Most children with Rett eventually can’t walk, talk or use their hands. There is no doubt that it is one of the cruellest diseases and as parents, the hardest thing is knowing that things will get even worse as she gets older. Lara faces the prospect of epilepsy, severe spinal curvature, life-threatening breathing problems and feeding difficulties. Our hopes, dreams and inspirations we have for our Lovely Lara remains the same. We wish to give her the very best and happiest childhood we possibly can. In order to do this, we need help. we need to be in a position whereby, we can afford to give Lara everything she will need Your support will help us cover the cost of specialist therapy sessions , travel back and forth to London for treatments and appointments, state of the art walking frames and wheelchairs when the time comes and help us with costs of living expenses as I’ve given up my career to take care of Lara full time. While we have mixed feelings about raising money in this way, so many people want to help, and this is really the best way right now. We realize we've set a lofty fund-raising goal, but our future is unclear--we have no way of knowing how severe this will affect Lara and the home adaptations we may need to make, or indeed move to a more accessible home. As Lara’s very clever big brother Jack said “ the world needs children like Lara, as it teaches people to be kind and compassionate”. That it does and the world will always be a better place for having our lovely Lara in it. Thank you for reading our story and any amount of donations will be so very greatly appreciated. To watch Lara’s story’s please visit YouTube https://youtu.be/YCsDQ-etW3Q Or my Facebook page #rettsyndrome Much love Carrie and Simon xxx