On the 8th of September 2016, my soulmate was born. He came into the world in a body that didn’t work, but his heart and soul was stronger and more loving than anyone I had ever known. 
 

He was loyal. 
 

He loved so fiercely. 
 

He never saw his family with his eyes, but the moment he heard their voices his face would light up. No one has ever loved me like he had before and I know no one will ever love me like he did again. I know this because he lived a life like no other, he lived four and a half short years experiencing more pain and more suffering than we would ever experience in a lifetime. But because of that pain and suffering he knew how incredible it was to be alive, to live an hour without pain, a minute without suffering. To be able to love and be loved. 

In those moments free of pain and suffering he did one thing, smile. 
His smile muscles were the only muscles in his body that worked.  They too suffered from the same conditions as the rest of his body, tremors, horrendous stiffening and seizures, but his smile muscles connected directly to his heart and his heart was stronger than all the pain put together. 

Zayden never spoke any words, he didn’t need them, we were one. We always knew what his heart was saying to us. We knew when he was too tired of fighting anymore and we knew when he was ready to go in peace to go dance in the sky, to do all the things his body couldn’t do on earth. 

Zayden is at peace now, and the reason we share his story is because we never want a child to live through the horror that he lived through. 

The horror that is GABRB2. 

Zayden was a GABRB2 warrior. 

GABRB2 tried to take him again and again. 

It made him seize for hours on end, his own muscles contorting broke both of his legs, his teeth chipped from the force of the muscle spasms, his own vocal cords strangled him, leaving him gasping for breath. Again and again his teams saved him from the symptoms of GABRB2. But no sooner did they fix one problem, would another emerge. 

Zayden couldn’t wait for a cure, his severe version of GABRB2 was just too much for any four year old to live with. 

But he would want to be a part of finding that cure for all his other little GABRB2 warrior friends. 

He would want that because through all of his pain, he only knew love. He was filled with love from his family, his teachers, his medical specialists and anyone that ever met him. And he would want to continue spreading love. 

He was a miracle. 
 

He was so loved. 
 

If we could have kept him forever we would have. 
But without a cure for GABRB2 that wasn’t ever a possibility. 

Please help by sharing Zayden’s love story and the magic of his smile and remember that whilst he was 1 in 1 billion with GABRB2, he was our one and only Zayden. He was our everything.

 

Please visit our donation page or help us connect to organizations/foundations who may be able to help.  https://give.rarevillage.org/campaign/cure-gabrb2/c349410

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