March of 2015 I will never forget the call we got from Leah’s doctors. See Leah was at first diagnosed with autism, which we we’re sure with therapy we could make progress and get her help. Well low and be hold she was misdiagnosed with not only something like autism for which still broke our hearts but something like Rett Syndrome for which she would never get better. Genetics doctors wanted us to come in for a two hour appointment, which was the longest and worst two hours of my life! Basically we were told Leah’s never gonna walk, talk, feed herself, dress herself, write her name. Let me add when Leah was first born she was born with a club foot (devastating) let alone her getting misdiagnosed THEN to find out with something worse like Rett Syndrome. So here is basically what I want everyone that has a child who has no major problems to think about.......
Imagine
Imagine being sat in a chair, while you watch other people walk around......
Imagine going to the beach, being stuck on the sea wall, unless they have specialist wheelchair access, watching everyone else having fun on the sand and in the sea, and you can't do this because you're stuck in a chair...........
Imagine seeing all the fair ground rides, and people screaming and having fun, and you can't do this because you're stuck in a chair.
Imagine people walking round eating ice cream without a care in the world, while you can't hold an ice cream, because your arms no longer work or your fingers can’t grip.....
Imagine having an itch that needs scratching, but you can't unless you ask someone to do it for you.........
Imagine going out for dinner, and knowing everyone is watching as you're struggling to feed yourself and then you have to be fed in public, people now really stare..........
Imagine watching others giving each other a hug, knowing you can't do that anymore...........
Imagine seeing dogs on the street, who are loveable and all you want to do is stroke them, because this is your passion, but the dog is scared of your chair, and too big to be lifted to you, so you have to watch while others get to stroke it, while you desperately want to ..............
Imagine having to be washed, and dressed while you just lay there wishing you could do all this yourself at your age...
Imagine having to have help when you need the toilet, all the while wishing you had your own privacy to be able to do this yourself..........
Imagine going to bed at night, asking someone to get your legs this way, your arms that way, while wishing they would just move for you ...........
Imagine at 12 years old, you still have to have a baby monitor and call out through the night because your body that will no longer work to be put into another position, when all you want is to not have to call for help and do it yourself.......
Imagine laying in your bed having to depend on someone else to get you up every single morning...
Imagine watching everyone open their Christmas gifts and you having to have somone do it for you all the while wish you could just rip the paper off yourself.....
These are just a few examples of what will run through a childs head with Rett Syndrome........
Just take one day, and put yourself in this position, you wouldnt want to would you..........
So why should our loved ones have to..............
Imagine how they feel every day! Next time you're doing one of these things, imagine if you couldn't do it.............
Imagine If you were Leah....
Please share and help us make people more aware of Rett Syndrome 💜💜💜
If you are a Rett family, please feel free to adapt as suits your child and add their name instead
Thank you 💜💜💜
I love you Leah more than you could ever imagine.
You are my inspiration!
Lisa Hatton