Story of my life

and through it all...
and through it all…

I’ve been writing blogs for some time now, but this is possibly the hardest one I’ve had to write. I want to give you a small glimpse into what it is like to live with Rett syndrome.

Rett syndrome is a complex genetic disorder that affects the connections in a person’s brain, robbing them of their ability to walk, talk or use their hands in any meaningful way.

Rett is a domino effect that plays havoc with so many things; the symptom list is just heavy reading and seems to go on forever. Locked inside her body with no traditional means to communicate, she is literally a hostage to her DNA.

Rett syndrome is something that will profoundly affect your life and the lives of every one around you.

Right now Rett syndrome is a life sentence for him or her.

But for everyone else, the truth about living with someone with Rett syndrome means that nothing is easy any more. All the things you expect your child to grow up and do are not even on your list any more. A simple thing like tying a shoelace, is replaced by lacing them into ankle supports.

I’m not telling you this for sympathy, I’m telling you this for understanding.

The first thing a Rett parent does when they wake up is think about their child and the last thing they do when they go to bed is worry about them. Not “normal” parental worries, rather things like what happens if she chokes in her sleep or has a seizure, how does she call me? They then spend the day worrying about everything in between. There is no respite from the worry, it’s a constant, consuming companion.

For parents of children with Rett syndrome, life passes you by as you care for and share your child’s life, fighting for tiny wins. Those small quick calls to friends, those minutes where you could just dash out to the shop, they’re gone. Not temporarily as you wait for your child to get to an age so you can do it again. They are gone. You can’t just dash out anymore, and chances are you won’t be able to in future, it’s just not an easy thing to do. There is no dashing, there is only meticulous planning and loads of packing. Making sure you have medication, food, supports, wheelchairs and various other every day necessities.

Rett syndrome is a paradox of fragility and toughness, for the people affected by it, it means frustration, pain, and the need for constant care and supervision. The problem here is that as we learn more about it, so we discover that the mental abilities of the people affected by Rett have been severely underestimated.

Walk a mile in my shoes...
Walk a mile in my shoes…

I can tell you that despite all these horrible things they have to deal with, in spite of all the obstacles that Rett syndrome throws in their way, these people are happy. They’ve learned patience that comes with being locked in. They live, love and laugh, they inspire people, bring out the best in people. They make us cry, laugh, live and love. They teach us to take joy in little things, to take pride in small details.

There’s been rapid progress in the field of Rett syndrome since we discovered the gene responsible for it; a few clinical trials are on the way and many more hopes are in development. The only thing that stands between this life sentence and setting them free, is money.

That is the simple fact.

Everything we do on the awareness front is aimed at raising enough money to make a meaningful impact on the progress to treatment and a cure.

There is something you can do for people and families who live with Rett syndrome, you could be just a little more patient, because they need their friends more than ever. It’s not that they forget you, or don’t think about you, it’s that all those precious seconds get stolen and before they know it, it’s the end of the day and they’re just praying that when they wake up tomorrow everything went okay.

This album for this blog is going to be different, it’s slow progression of images over the next few days. I want to take the time and care to explain this, what it means. From the simple space these things occupy, to the knowledge that extends with it.

My friend Mimi spoke about being a Rettologist, I hope to show you how in pictures.

If you want to be part of this story, send me your pictures.

The picture album is here : Story of my life

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