I still remember the day, the moment we were given Lysbeth’s diagnosis of Rett syndrome. I fell to my knees in the middle of the street while Dan tried to hold me up. I cried and kept repeating the word- no! no! 

Luckily it was a quiet street although at that moment I was lost in a different world and it wouldn’t have mattered where we were. It was the worst moment  of my life. It was the diagnosis  we had been dreading to hear.

I fell asleep that night, the next days, the next weeks and months in a bubble of darkness - my little girl’s life had changed forever in ways that I could do nothing about. I didn’t know what her fate would be or what I could do to help her. It was hard to endure. I felt utterly alone! (Even with my wonderful family and friends trying to help in anyway they could). 

I often remember thinking that when I had my babies, a midwife was there all of the time. Then I took my babies home and a midwife still came for days and weeks after the birth followed by a healthcare visitor. By contrast, when Lysbeth was diagnosed there was nothing… no visits, no check ups to see how Lysbeth was, how we were, no information and support guides- just absolutely nothing!! We had Google and that’s not good- especially when a lot of the information out there about Rett is factually incorrect. (The biggest inaccuracy being that people with Rett are cognitively challenged- they are not - they do not have intellectual disabilities, they have communication difficulties). 

If was a bleak and difficult time for myself and our family.

And that’s why I am so grateful to Rett UK. I eventually found out about the charity and they were the beginning of the light at the end of the tunnel for me. The beginning of making me stronger for Lysbeth, to be there for her battle. Because Rett is a battle- It’s rough- the seizures, the difficulties that come with being non-mobile, non-verbal, having no hand use, sleeping difficulties, dystonia, respiratory issues, aspiration, involuntary movements which present themselves similar to Parkinson’s, a simple illness like cold being life threatening. Life is cruel and it’s hard. 

Since being in contact with Rett Uk, Lysbeth now has a communication device, we have had training on how to communicate with our non-verbal daughter and how to support her with her communication, she can even spell using her eyes to point at letters. She’s very smart!! They have supported us to find a community of mums and dads and this has been invaluable. It’s nice to know we aren’t the only ones, we have people to turn to, to confide in, people who really understand- common ground. 

Life with Rett is tough, our country, our world has not been built for disabled people and it makes life even harder. Some days I don’t want to leave the house as I know there will be no safe place to change my daughter, what if she has a seizure, what about blended food? - but I am a mummy to 4 little girls who all need to leave the house, so I do.

Perhaps, over time the country, the word will change and disabled people won’t be so discriminated against. Not everything is possible but there is hope. Hope is another chapter. Hope is what comes next. 

In the meantime I have to be thankful for the people that do help and who are making a difference- Thank you Rett UK. Thank you for being their for our brave and beautiful daughter and for being there for us as a family. 

Please donate if you can so that Rett UK can continue to help and support others with Rett Syndrome.