1 in 7.4 Billion

By Zayden, Undiagnosed, China, February 19, 2018

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 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. 

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. 

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 didnt work as they should and why his eyes couldn’t stay still and why he had so many seizures. 

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, however 17 months own we are still without answers. 

Now Zayden looks healthy, he never gets sick. He fights against his muscles constantly. 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. His eyes never do what they should and now we only see his eyes for a few minutes a day and the rest of the time they are closed shut. 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 as a board. 

He loves to be cuddled and carried and spends a lot of time in our arms as he is completely reliant on his family. 

 

He has a beautiful gentle personality, he is a warrior who rarely complains. He doesn’t have words yet but he has remarkable bonds with his brother and us. 

 

We still hope for answers but until then we will continue to believe that no diagnosis means no limits. 

 

*Join the international Undiagnosed diseases online community.

 

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