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Ruben and Thelma (Alejandro's parents) - Topeka, KS

 

“Our son, Alejandro, was diagnosed with Cystic Fibrosis (CF) when he was six weeks old. This was a time with many mixed emotions for our family. Alejandro is a twin and we were thrilled to welcome two new babies into our family. Along with our excitement, there were many sad times because we were scared of the unknown: CF and our biggest fear as parents came true with his diagnosis. He has a chronic illness that can be managed, somewhat, but has no cure.

CF is a disease that requires Alejandro to take many medications and breathing treatments. As part of his treatment, his doctors prescribed medication during the respiratory syncytial virus (RSV) season. Alejandro was prescribed one shot per month for a total of five shots; one for each month from November through March. Our out-of-pocket cost is $750 [$150 per shot], which is a huge financial burden. We applied to the HealthWell Foundation for financial assistance in order to be able to pay the copayment for Alejandro’s treatment. We also contacted the manufacturer of the drug. Unfortunately, having CF does not make you eligible to receive financial support. Having a child with a chronic illness has placed a lot of stress on our family, especially on my husband and me.

Not being able to afford medication for our child is devastating and extremely frustrating for us as parents. This is why we are so thankful for the Pediatric Assistance Fund through the HealthWell Foundation. Without a grant, we would not have been able to afford this extremely important medication for Alejandro. Receiving help was heartwarming to us because, although the contributors to the Pediatric Assistance Fund do not know our son, they were willing to donate money to ensure a child who is in need of medication receives it. On behalf of Alejandro and our family, we would like to thank all of those kind people who donate their hard earned money for children like Alejandro who need extras in order to live.”

Ruben & Thelma (Alejandro’s parents)