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.

We were told that there is treatment which was good news, but that there was no cure…yet. We spent 40 days and 40 nights in the hospital and finally on October 19, Kaden was finally discharged and able to go home.

It has been three years since Kaden was diagnosed. He is now almost 4 years old and is thriving just like any other 4 year old. Every day and every year gets a little bit easier. We have learned to take things as they come and live day by day.

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 the quest for a cure in order to help Kaden and all the children and young adults.

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