Rett Syndrome Awareness

NOTE: This blog started as a Facebook post. I had intended to write more for Rett Syndrome Awareness Month, but Campbell was having seizure activity, and that's all I could focus on for the most part.

October is Rett Syndrome Awareness Month(also Domestic Violence and Breast Cancer Awareness). As most of you know, my Campbell has Rett Syndrome.

When she sleeps she seems free of Rett

I've come to terms with the reality that she *may* never walk or talk, and yet I hold hope to science that makes amazing strides, almost weekly. Treating Rett means potentially treating conditions like Parkinson's, anxiety, epilepsy, autism, MS, you name it. It's referred to as the "Rosetta Stone" of neurological disorders, as Rett has all the symptoms of so many other conditions.

Awareness is terribly important. Though rare, it is as common as ALS, but almost no one is aware of it until it hits them personally in some way. Being aware of Rett, and how important it's treatment can be to more than just the Rett community, is a big deal. A light needs to shine on this condition that takes our girls away from us.

"Hey, dad, tell then how great I am!"

There will be fundraisers. There will be a lot of posts on social media. You may even be reading this as one.

Google "Rett Syndrome". Read my earlier posts. I wrote this one just a few months after Campbell was diagnosed, so the feelings were fresh. I wrote this one much later, when I had more come to terms with what Rett Syndrome meant for us and would continue to mean to us.

What this means for me, is that I have a 6 year old who, while non-verbal and (so far) non-ambulatory, has taught me how to be happy. She manages a word or phrase now and then, and is even taking initiative in learning to walk, for the first time. She has a long way to go, and if certain treatments are found to work, the road for her may be shorter.

She is the happiest child I know. Unless something is truly bothering her, she is happy. She is smiling, her eyes are showing the fire in her soul, which will not be quenched by limitations she has for the moment.

cuddles.

Even in school, around "normal" kids, people love her. She smiles and laughs, and when she's doing therapy rather than mainstream classes, the children miss her, and ask about her. In circle time, if she clasps her hands, a child on each side of her will hold a hand each. She has a way of bringing out the best in everyone..

As my three girls grow into amazing young ladies, each one very much themselves, I realize two won't need me forever. I'm proud of that, and it's also one of the hardest things for a father to accept about his little girls. Campbell may always need me. We're buds. Although I'd do anything to make sure she has every chance in the Universe, I also wouldn't change who she is for anything.

Finally, to anyone and everyone: When it comes time to make your charitable donations, don't forget rettsyndrome.org.