Help for Carter

Every parent can relate to the stress and agony of seeing their children sick. We have all been there, but what if, God forbid, your child was REALLY sick. What if, your child was diagnosed with a rare genetic condition, that little is known about, and there is no cure. Carter has been diagnosed with Cystinosis. Cytinosis is a rare, condition that causes an amino-acid to be stored in his body's cells rather than excreted.   Kidney failure, multi-organ failure, rickets,muscle wasting. blindness, are all related to this disease. Little Carter, at the sweet age of 15 months, has struggled to eat, drink, grow, and thrive. Recently, he has spent more days in the hospital than he has at home. He has had to have a surgical feeding tube (g tube) placed to help him with feedings and his medications and a fundoplication so he cannot vomit up meds. He is still having numerous issues to date in his recovery from this surgery. There is ONE specialis that may be able to really help him. The doctor is in Maryland,but there are still numerous hurdles to overcome before the evaluation takes place. In the meantime you have a famil faced with every parents worst nightmare. A family with another healthy (Praise God) child, that does not understand whats going on with her brother and parents. A family that is fighting for their son. They are not fighting for a cure, there is no cure. They are fighting to just to get Carter healthy enough to successfully start his treatment. You have a family that is thankful for the insurance coverage they have in this difficult time, but also fearful of the time taken off work to tend to Carter's health. Fears that it may jeopardize the job that provides the insurance. You have a family that feels torn between 2 children. One is so sick, and the other is just so young and confused as to what is going on and why. You have a family that is spending more time and money on parking fees, gas, and quick bites to eat each week (during the numerous, day long trips to the Cleveland Clinic) than most people do in months. You have a family that lies in bed at night wondering how they are going to keep going. We all know how expensive prescriptions can be, can you imagine the cost of a prescription for a illness that less than 2,000 cases have been diagnosed world wide?!?!?! There is so little comfort that has come to this family in the last 6 months, I pray that our help can be that comfort. Together, we can donate and help. Help with medications, travel expenses, parking passes, medical equipment, and numerous other expenses that we cannot even imagine. If you are unable to help, PLEASE just share this story. You can learn more information on cystinosis by visiting the page below. Thank you for your help, your thoughts, and your prayers. https://cystinosis.org/what-is-cystinosis/symptoms-treatment