Danielle Harrison

 Danielle was diagnosed with Cystinosis when she was 15 months old. She had been sick since birth but she became very sick when she was 9 months old. We took her to the doctor but he did not know what was wrong with her. She ended up in the hospital for weeks. The doctors at the hospital told us that Danielle was like a “ship with a hole in it” – she would be in and out of the hospital until they could diagnose her. Fortunately a home nurse came to visit us. She took one look at Danielle and told us to immediately take her to Phoenix hospital before she dies. We met Dr. Haws there and he diagnosed her with Cystinosis.

When Danielle was diagnosed a year and a half ago, she was failing to thrive. She had advanced rickets, high blood pressure, was frequently vomiting and was diagnosed with a heart problem. Today, Danielle is 3 years old – she still has the high blood pressure and the heart problem. She is also beginning to have problems with her eyes. Danielle takes thirteen different medications and supplements every day. Her medicine schedule begins at 5:00 a.m. and ends at 11:00 p.m. Her medicine is administered 7 different times each day. She weighs only 33 pounds and is 35” tall – she is not on the grow chart for height at all and just made the chart for weight.

Danielle has had nine hospitals visits to date. She has been in the hospital for renal failure several times and twice because she stopped eating. She has a g-tube so that we can more easily administer her medications and nutrition. She has been at “death’s door” three different times but each time she made it through.

When Danielle was first diagnosed, we did not know how rare Cystinosis was – all we wanted was for Danielle to be well and out of the hospital. When we learned more about Cystinosis, how rare it is and how horrible the disease is, we were devastated. As a parent, the hardest part of this disease is the lack of sleep and the unknown. Now, we take things one day at time and enjoy every day with her. Our wish for Danielle is for her to have a happy, healthy, long life. Thank you for all you are doing to help find a cure for Cystinosis.