Kaden Thomas' Story

“Every day and every year gets a little bit easier. We have learned to take things as they come and live day by day.”

Kaden Amari Thomas was born on January 12, 2016. For the first six months of Kaden’s life, everything was as normal as it could be for any growing baby. But at seven months, things started to change drastically. Kaden stopped eating solids, began to drink unusually large amounts of water and refused to drink milk, and finally, his muscle tone began to decrease.

On September 7th, 2016, Kaden was taken to the emergency room for further evaluation which revealed critical lab values, requiring him to be admitted to Joe Dimaggio Children’s Hospital. Over the next three weeks, after seemingly hundreds of fingersticks, a dehydration crisis, an NG tube, G tube and an endless list of labs, Kaden’s team of specialists were finally able to diagnose him with something we had never heard of in our lives, Cystinosis. 

Kaden is now six years old and going into the first grade. He is doing amazingly well in school. He is reading at a second-grade level and loves math. Kaden continues to prove to us that he can do anything and doesn’t allow cystinosis to hold him back.

He enjoys playing with his puppy Ginger, and playing with his toys, and is now learning to play the piano, and he is taking swimming lessons. Kaden loves cruises and will be going on his sixth cruise in June 2022. Despite the pandemic and the crazy world we are living in, the Thomas family continues to pray for a cure and enjoying life to the fullest.

We feel so blessed to have the love, and support of our family, friends, and our cystinosis community. We thank everyone for supporting the Cystinosis Research Foundation and joining our quest for a cure to help Kaden and all the children and young adults with cystinosis.


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