Tina Flerchinger
In September, we will celebrate a huge milestone, the fifth birthday of our youngest daughter, Tina Marie. When Tina was born we relived the miracle of life once again. But, it wasn’t long until she was fighting for her life. At 17 months of age Tina was diagnosed with a life threatening illness. After months in and out of hospitals and a team of specialists in pediatrics, nephrology, genetics, gastroenterology, ophthalmology, radiology, nutrition, and endocrinology we were given devastating news. “Tina has Cystinosis”. We were sent home with a supply of medications---33 doses to be taken on a daily basis. Tina has taken 29,285 syringes of liquid meds and 17,000 pills since diagnosis. Her life depends on it! On the outside Tina looks like a typical toddler, but inside her body is slowly deteriorating. Cystinosis is a complex disease. It slowly destroys the organs in the body including the kidneys, liver, eyes, muscles, and brain. The earliest abnormality is in the kidneys. Tina already takes a multitude of medications due to kidney damage. Tina’s “miracle” medication is a drug called Cystagon (cysteamine). Cysteamine was first used in the Cold War for radiation treatment. Needless to say, it has harsh side effects, one being severe gastric upset, foul sulfur smell, and a terrible taste. As each day passes, it becomes more and more difficult to coerce Tina into taking her medication, she burps up what smells like rotten eggs for hours later and says it makes her “tummy hurt”. It makes her nauseous and she vomits often. After six hours the medication wears off, the cystine crystals start to crystallize at a faster rate, and she takes the medication once again. These crystals are destroying her tiny body. Therefore, timing is of the essence! Recently, as I tucked Tina into bed, she said, “Mommy, I’m sick!” She asked, “Mommy, why am I sick?” and then, “Mommy, who made me sick?” As tears welled up in my eyes, my heart sank into my chest as I tried to explain that she is a gift from God. It is very difficult for a four year to understand the “why’s of life”. Mark and I want, more than anything, for Tina to be a “normal” child, but she is starting to realize that indeed she is different. Our older girls have been such a blessing! They treat Tina with such kind affirmation and care for her so beautifully. Nighttimes can be difficult in the Flerchinger household. Tina gets seven medications multiple times during the night. We administer medications into a gastronomy tube (a tube surgically inserted into her skin and stomach wall). Her medication makes her nauseous and she often wakes up vomiting. Tina drinks two gallons of water around the clock. This in itself presents problems. By the time Tina is 10 years old, if she still has her kidneys, they will be like that of a 60 year old, due to damage. We know that a kidney transplant is in her future. Tina’s medication helps slow down the disease, but there is no cure for her and others who suffer from this devastating, lift threatening illness! After meeting with a handful of researchers, pharmaceutical representatives, as well as physicians who work with the CRF we are convinced that a cure is on the horizon. These dedicated professionals won’t stop until they find a cure. We’ve heard each of them say the only thing keeping us from a cure is money for research. We are optimistic that Tina will have a second lease on life! This would be the miracle that we’ve prayed for. Having a child with a terminal illness brings unimaginable heartache. It hasn’t been an easy three years, but Tina’s courage and perseverance has proved amazing! God has entrusted us with caring for Tina and that in itself is a gift.
To read more about the Flerchinger family’s efforts to support cystinosis research, visit www.tinashopeforacure.org
