By Denice Flerchinger, Tina’s Mom

Last year at this time, we noticed Tina’s health was declining with daily migraines, lack of appetite, stomachaches and extreme exhaustion—leading her to nap six hours a day.

Tina was consuming 83 pills a day with two gallons of water barely maintaining her health. One Sunday, she invited her friends to go boating only to find she did not have energy to get in the water or carry on a conversation. On other summer nights she would go out only to return home sick and frustrated. She was fading away before our eyes.

A call from the pediatric nephrologist informed us that Tina was in the final stage of kidney failure. The next eight months were filled with doctor visits, tests, procedures and a plethora of blood draws—which included hundreds of test tubes.

Fast forward, October 2019, Tina received the gift of life, a new kidney from her father, one week after her 16^th birthday. He was a perfect match!

This part of the journey has been emotionally exhausting, bringing back memories of Tina’s diagnosis. Today we are still trying to find our new normal—balancing a new set of medications and struggling a bit to boost Tina’s immune system, but I am hopeful given how far we’ve come.

Being a teenager is hard enough without the multitude of complications that come with having a rare disease, and some days can seem unbearable, but we have the hope the Cystinosis Research Foundation has given us. And Tina’s renewed energy has allowed for her to “finally live life” (her words, not mine)—going snow skiing as soon as she got the green light from her doctors, earning straight A’s and fulfilling her dream to participate in a high school team sport…she’s loving track and field!

Tina has overcome many obstacles with her strong faith, courage, and determination. She is happy, she is thriving…and we are ready for the next chapter (stem cell treatment)!