1 in 7.4 Billion

The story of Zayden

At three weeks old I knew something was wrong. I told doctors (many) and nobody listened to the sleep deprived and perhaps paranoid mother. 

At two months old we wrote a list of the things that “weren’t right” and took it to a doctor who listened, listened carefully, examined and saw what we saw.  He saw that Zayden wasn’t reaching any milestones, he saw that no matter how much love Zayden was given he wasn’t giving any back, he saw that Zayden was tiny and he saw parents trying everything to feed him. And he saw the eyes that flickered, just a tiny flicker but an important flicker. 

He immediately wrote referrals and started us off on the journey into a new world. 

A world where we thought doctors had all the answers and followed by answers came cures. 

We did all the first set of tests and went back to our lives to wait for the results. Six weeks later the results came back… inconclusive… 

Zayden still hadn’t grown, he was tiny and hated nothing more than eating. We took him back to the doctors, he was admitted immediately, given a nasal feeding tube and spent the next 44 days getting poked and prodded, with teams and teams of doctors coming to see him daily, each one trying to piece together the puzzle that was Zayden, each one trying to help in anyway they could. An operation to help him breathe better, an operation to give him a feeding tube in his stomach. 

Then the family meeting, in a big board room full of doctors. The meeting that told us they had tested all they could test and there were still no answers. The meeting where they told us “prepare yourself there may never be answers.”

They didn’t know why Zayden wasn’t meeting any milestones, why he had a movement disorder that made his whole body dance, why his muscles didn’t work as they should and why his eyes danced all over the place, why he suddenly began having 30 plus seizures a day and why when he ate the food went into his lungs. 

But by this stage Zayden was well nourished breathing well and smiling again. They had done all they could do and it was time to go home and continue with life. 

We never stopped visiting doctors, we have flown across the world to meet with the best specialists, however 17 months on having done every test possible we are still without answers.  I once asked how “rare” is Zayden’s condition and the reply was, “Well there’s 7.4 billion people in the world and we can’t find another case the same as his.”

Now at 17 months old Zayden looks healthy, he never gets sick. He is the most beautiful looking little boy.  He fights against his muscles constantly. He has the gross motor control of a three month old. Sometimes he has better days than others. Sometimes he can eat, other times it’s too hard. Sometimes he can smile, other times it’s too hard. Sometimes he can say “more” and “Mum” and “Ry ry” but most of the time its just too hard.  His eyes never do what they should as they dart around this way and that and now Zaydens eyes “mystify” doctors as they stay shut for most of the day . His seizures go up and down. His body constantly dances its little dance. Some days the dance slows and his body is all floppy, other moments he is stiff and gets cramps. 

So what does it feel like to be Zayden?  No one knows for sure. But what we know is he knows that he is stuck, we know he knows that is is hard, but he is a warrior who continues to fight and never complains.  If you were to add up all the hours Zayden has spent in therapy and hospitals it would be more than a third of his life. He does hours of therapy, he will let you know it’s tough but he just pushes on fighting day after day to gain control of his body.  

I bet he also gets tired of every person he meets thinking he is asleep. 

So what’s it like to live with Zayden? He wakes up each morning and calls out “uh uh uh” to tell us he is awake because he can’t climb out of the crib like other kids can. You walk to him and the minute he hears your voice he smiles. He loves being cuddled and could stay being cuddled all day. He is brave, oh so brave. He lives in darkness in a world he can not even reach out to touch to feel where he is going and he just soldiers on. He trusts, he trusts that those that love him will guide him through the darkness and he travels the world, goes on adventures with his brother, going on slides, going on swings, being pulled around the house on a blanket and he trusts, he lays back, smiles and enjoys the ride.   He loves playing with toys. He loves custard. He doesn’t like noisy places unless its a school or a concert, he loves the sound of childrens voices and he loves music. He loves listening to stories. He loves swimming, this is the only time where his heavy body feels light. But the thing Zayden loves the most is his family. Just the sound of any of our voices makes him smile. And kisses oh this boy loves kisses, when we were in hospital there was nothing I could do but kiss him and tell him it would be ok. The kisses continued and Zayden began to say “more” to get more kisses and just recently he has started to be able to pucker his lips and give a real kiss. That’s not an easy feat for a child that can’t control any of his muscles. It just goes to show the power love has.  So to answer the question, it’s amazing to live with Zayden, there’s never a day that he doesn’t make us smile. It’s also heartbreaking, heartbreaking to know that he is trapped in a body he can’t control and we can’t do anything to help him get out.  We still dream that one day there will be an answer and with that day will come a cure. One good thing about being undiagnosed is no one can put limitations on Zayden and no one knows what to expect, so we continue to hope for the best and believe that one day the day will come that Zayden will be free of his body. And until then we will be his body for him, we will let him feel what everyone else can feel, we will see the world for him and tell him about it. 

 

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