Raise For Rose

Rose is our daughter and she is now 12 years old. For the first 15 months of Rose’s life she developed like every other baby. She was crawling, pulling herself up on the furniture and had started saying a few words. She was a happy, healthy child. However, in September 2012 everything changed. Rose began to show signs of regression; she stopped crawling, standing, talking, smiling, laughing and even crying. It was like her ‘off’ switch had been flipped. As if this wasn’t distressing enough, she then simultaneously started to experience seizures. After initially checking for (and eliminating) a brain tumour, she spent a week in Alder Hey Hospital in Liverpool undergoing tests. These were inconclusive; Rose still doesn’t have a formal diagnosis. All we do know is that some form of metabolic stress/environmental factor at around a year old, ‘switched on’ a previously dormant, altered gene. It would be nice to have answers of course, but actually, answers won’t change Rose or what we do to help her now.Since those awful months in 2012 she has progressed slowly, but steadily. We hardly recognise the little girl who became so ill 11 years ago. She took her first shaky steps at the age of 4 and now talks without taking a breath! Rose is a happy, bubbly young lady, whose humour and understanding of the world around her is fantastic, considering what she has been through. She has just started high school, goes to brownies, ballet and horse riding, can ride a bike and is in the process of becoming a pretty decent swimmer!

Unsurprisingly, despite this considerable progress, she is still some way behind her peers in terms of her development. She has some input from both physiotherapy and vision support, but the NHS, as wonderful as it is and as supportive as it has been to our family, can't provide the level of therapy Rose requires. We subsequently decided that, if Rose was going to have any chance of closing the gap with her peers, it was time to go down the private therapy route.

At first, we looked to the Family Hope Center in the USA, who we became aware of through a friend. Her son had been following their programme and they had seen outstanding results. Now, however, we have been fortunate enough to find a clinic on the Wirral (Blue Skies Neuro, in Eastham) which follows the same principles of neuroplasticity-based therapies. For those who don’t know (and I didn’t until we began this journey!), neuroplasticity is the ability of neural networks in the brain to change and heal through remapping, forging new connections and reorganisation. For children (and adults) with any kind of neurological injury or dysfunction this is the best possible way to create new connections in the brain which, in turn, allows the muscles and the nervous system, amongst other things, to restore their functions. This isn’t the only form of treatment that Blue Skies provide however; reflex integration, cranio-fascial/cold laser/hyperbaric and sensory therapy as well as intensive physiotherapy, nutrition advice and conductive education have all, at different times, been on Rose’s ‘to-do’ list!

It’s intensive, but it’s non-invasive and doesn’t involve any scary medication. I don’t want to think about where we would be without them. As a family we have worked incredibly hard and will continue to do so to make sure that Rose’s future is the best that it can possibly be! But private therapy is costly and this is why we need your help. Since we started fundraising in 2014 we have experienced an unbelievable amount of support. The kindness of both friends and complete strangers has been utterly overwhelming. We couldn’t do any of this without you. Anything you can spare would be massively appreciated. A huge ‘thank you’ in advance from us. Follow these links if you would like to know more about neuroplasticity and its related therapies:

https://familyhopecenter.com" target="_blank" rel="noreferrer noopener">https://blueskiesahead.org.uk/

https://familyhopecenter.com" target="_blank" rel="noreferrer noopener">https://familyhopecenter.com/