Miracles Happen Every Day

All these events are exciting.

Miracles Happen Every Day All Around The World | Amy Rees Anderson's Blog

People dress up, newscasters talk about the event for weeks before hand, and spectators come from miles around. In comparison, our normal, everyday lives can seem very mundane. We end up wishing our lives away waiting for that great, future moment. A blue sky, white clouds, green leaves, the black curious eyes of a child, our own two eyes.

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All is a miracle. Just the fact that you are alive is a miracle! Of all the millions of possible gene combinations, you came out. The timing was right, you have the right number of chromosomes, your mother was able to carry and nurture you for 9 months. All the conditions have to be just right for someone to be born.

Being you and being alive is truly miraculous. The sun comes up and the moon comes out. The earth spins on its axis and we have a brand new day every 24 hours. Random acts of kindness. A smile and connection with a stranger. All the different cultures of this world. We are all human yet we developed in many unique ways. Some speak Japanese and eat fish; others speak Spanish and eat paella. Still others speak Russian, English, and Gaelic.

We all communicate and create customs yet we have created different ways of speaking, eating preferences and creative expressions that make us special. We have created amazing technology that we use on a daily basis.

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You can speak into a little metallic thing and someone thousands of miles away can hear you. You can type on your keyboard and gain access to any information from anywhere in the world you want.

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It's pretty amazing that someone can play the guitar and bring you to tears because it's so beautiful. Your heart beats, your lungs expand, your eyes blink, your skin regenerates, your blood pumps throughout your body, you inhale oxygen and exhale carbon monoxide. Just think about all that your body does. You are a miracle.

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Every day people are connecting, forming friendships, valuing friends they already have. We get to choose who we want to spend time with, what we talk about, and how we spend our time together. She had some two-word sentences and was using a handful of words, but inconsistently. I assured my wife that she was "just concentrating on learning other skills.

Kids don't just forget words," I said. When our daughter was two and a half she started wringing her hand, "Focus," I told our daughter. I was wrong -- very wrong. The regression is devastating. Watching your child and all the dreams you had for her evaporate is an experience that is of the most heart wrenching, I think, anyone can experience..

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I imagine the feeling of getting a diagnosis that will change your child's life forever is akin to feelings and emotions one would feel at the beginning of a roller coaster, just as it starts to move, and they come on the loudspeaker to tell you the track is out. There are worse tragedies, for sure. But at least most of those are final. This is a lifetime of frustration.

And not just for us, for our daughter as well. She is trapped in a body that won't do the things she wants it to. She can understand everything around her but cannot engage with the world in return. Now that we're past the regression we hope , we're anxious to find a cure. Rett Syndrome is curable. You can read that again, if you'd like. In some ways, we're fortunate that we know what it is.

We're fortunate that it is curable. Not everyone with sick kids has that luxury. Though currently no cure exists, they have been able to reverse its effects in mice. They've learned that it is not degenerative. That means that when they find a cure, it will be somewhat like turning on a switch and many things she can't do now, she will be able to afterwards.

It's really an amazing discovery and it gives us so much hope. But hope is not enough. A treatment and a cure are possible, but the trials and research need funding. The more trials we can fund, the more opportunity there is for kids with Rett Syndrome. The urgency is real as well because every day that goes by, my daughter gets closer to the possibility of experiencing the worst of the symptoms.

One of which is sudden death. I made this video to raise money for my daughter and the thousands of girls like her.

The faster this video spreads and we find a cure, the faster no one has to read anything like this about Rett Syndrome again. Diabetes used to be a disease without treatment. Aids used to be a disease without treatment.

We want Rett Syndrome to be on that list. Scientists say curing Rett Syndrome could be the gateway to curing Alzheimer's, Parkinson's, and other neurological diseases. Actually, I look forward to my daughter saying it. Won't you be one of them? Let's fight this together. Tap here to turn on desktop notifications to get the news sent straight to you. And that day won't be soon enough.

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