Home > Causes > Adams Family, CF is not forever

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Setting Them Free
601 South Windsor 
Mesa, Arizona , USA 85204

Please be sure to include any information about which patient or cause you would like the funds donated in honor of.  Donations without a specific patient or cause will go into our general donation fund.

We are the Adams family. We have lived in beautiful Mesa, Arizona since my husband and myself were married 12 years ago. We have been blessed with 3 vibrant children. Our family is unique in that 2 of our 3 children have a genetic lung and digestive system disease called Cystic Fibrosis. When our first child was born (Maelee) with the disease in 2007 it was alarming and completely foreign to us. At first we feared that the vision we had for our family life was gone. However as we became educated and slowly learned how to manage the disease and make it our “normal,” we realized that having our baby and being a family with her was our dream come true.

We learned that every time we had another child there would be a 25% chance of that child having Cystic Fibrosis. We also learned what it meant to be a family and be parents and that the CF percentage didn’t matter as much as making our family complete. Our second son, Charles, was born in 2009 without Cystic Fibrosis. Our third son, Orson, was born in 2011 and like his older sister did have Cystic Fibrosis. Managing two children with a chronic illness was a big adjustment and we assumed that we indeed were finished bringing children into our family. In 2014 my husband and I found ourselves having conversations about more children. As crazy as it sounded most days to have another child knowing 2 already had Cystic Fibrosis the pull from this sweet baby was strong. Our 4th baby, Ruby we will name her, is coming this summer. We found out that she also has Cystic Fibrosis last month.

Our normal is changing again as we prepare for another child with Cystic Fibrosis. Over the past 8 years as maintenance medicines have increased and children who need the meds have increased our ability to manage the costs on our own has become unrealistic. Basic maintenance meds after insurance for one child with Cystic Fibrosis after insurance covers their portion is $150. Add onto that the cost of specialty doctor appointments, routine CF lung function tests, chest x-rays, blood work, specialty antibiotics all multiplied by three CF people – and a fortune is piled up of bills to pay. Our son will get a gastrostomy tube (requiring surgery, more machines, and all the liquid nutrients that go into this long term nutritional assistance) before the baby is born to help him get extra calories and gain weight. Our baby will need a CPT (chest percussion therapy) vest as soon as 8 months old to start managing her lungs which will at least be $5,000 from our pocket.

This all said, we are having a fundraiser to help our family alleviate some of the pressure and costs of this disease. Our gratitude for any person, business, or organization that can help us is so sincere. We are amazed at the kindness and generosity of the people surrounding our lives.