We’re just a normal family, trying to cope with the daily challenges of a not so normal syndrome.
But at eighteen months her development started to slow, her acquired skills started to slowly disappear, and the milestones stopped coming. There followed another eighteen months of appointments, meetings, assessments and tests, until finally, a month before her third birthday, we were given the diagnosis of Rett Syndrome.
Mercifully, we had no idea at that time what Rett Syndrome was or just how much it was going to steal from our daughter. But slowly, we have found out. At the point of diagnosis, Hannah could still walk and climb independently, use her hands purposefully to feed herself or turn the pages of a book, say a handful of words clearly, breathe regularly and function relatively independently.
Today, Hannah has highly limited mobility and needs assistance when walking, has highly limited hand function due to Parkinsonian tremors, has only two remaining words which are rarely heard, breathes irregularly and has sleep apnea, has developed partial epilepsy, and has almost no independent skills remaining. Full blown epilepsy, scoliosis, further breathing and digestive issues and complete loss of mobility are all very real possibilities for the next few years.
But this is not the whole picture. Hannah is also a 7 year old girl with an immense personality, an infectious giggle and a mischievous smile. She is big sister to two boys whom she loves, especially when they are naughty, and she captivates most people who meet her. She takes immense interest in the world around her and has an awful lot to say about it, if she only could. Rett Syndrome traps her inside a body which will not allow her to express all that is inside her and, as a mother, this is the most frustrating and heart breaking part of all. Hannah’s brain is not damaged, we know that she understands far, far more than she is able to show or than we generally give her credit for. We need to unlock her.
Which is why, since 2010, we have been committed to fundraising for Reverse Rett and their dedicated research to speed treatments and a cure for Rett Syndrome. Since that time, Hannah has inspired so many of our friends and family to join this fight, and collectively we have raised around £130,000 in those four years. We are not stopping. Please read more about the different events and challenges we have done over the last four years, and PLEASE do look at how you can get involved or support our fight too.
Thank you. This is what your help gives us: