Keegan Manz's Story

“His personality lights up our world and is so contagious people cannot help smiling when in his presence.”

Keegan is our loving, bright-eyed, spirited, happy six-year-old. He loves school, chasing his big brother, animals and books. His personality lights up our world and is so contagious people cannot help smiling when in his presence.

Keegan was born in April of 2013.  He was a very happy and content baby. He was also a very good eater and remained in the 100th percentile in height and weight until September that year.

In August 2013 we started to notice some changes. He began spitting up more, his bowel movements decreased to once a week and he started to gag at his feedings.

I took him to the pediatrician and was reassured “this is normal”. We knew something was “not normal” but tried to brush off our fears. A few weeks later he began vomiting in the car, his gagging increased with each feeding and he seemed not to want to eat at all. He would wake up at night, in distress, uncomfortable and always on the edge of vomiting.

We took Keegan to his doctor several times that week. Again, we were reassured and told it was just a virus or something temporary. His weight dropped from 23 lbs. to 18 lbs. Our concerns increased so we took him to the ER. There they ran a battery of tests and immediately admitted him into the hospital. As we were getting settled into our room, a nurse came by for more blood work. Minutes later Keegan was swept away to intensive care. His potassium level had dropped and was dangerously low. Later we were told that he would not have lived through the night if we had not taken him to the ER that day.

Keegan spent a month in the hospital as doctors, interns, and nurses performed tests and procedures and fought to keep him hydrated.  Throughout it all Keegan, with his wonderful smile, managed to stay his happy self. On October 13, 2013 we received the news– Keegan had cystinosis. We were told there is treatment, which was good news, but also told there is no cure….yet.

Our Normal

We have found our new normal and because of cystinosis we have grown stronger, braver and more compassionate. Unexpectedly, this journey has blessed us with so many gifts. We are grateful for all the support that the CRF provides. They are helping our family, and many others, thrive with cystinosis. When we are scared or worried, we hang on to the hope that cystinosis will soon be cured! Love and hope are the foundation of our family.

Thank you for joining in our quest for the cure!

Nicole, Brad, Shane and Keegan

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