As you may know, Aubrey was diagnosed with Cystic Fibrosis (CF) on November 14th 2014, one week after she was born which was a complete shock to Brittany and I. We didn’t have a clue what Cystic Fibrosis was, but hearing that your daughter has a chronic life-threatening disease, was devastating. On top of being first time parents and learning to care for a child, we knew that what we thought was going to be normal was about to change. The one thing I did know is that we were going to do everything in our power to keep her healthy and try to make her life as normal as possible. We would not be able to do it without the support we receive from our family and friends, and for that we thank you!
This last year went by so quick and it is hard to believe that she is now one! Though the year did go by quick, Aubrey did have a pretty tough year; in 2015 she was hospitalized due to illness on three occasions with her June stay being the worst. Since that stay she has not been able to gain weight, even though she eats like a champ. For the past few months we have been in talks with her CF care team at Hershey about having a gastronomy tube inserted, on November 10th Brittany and I opted to have the G-tube inserted into her stomach, which we will use to administer overnight feedings to help add extra calories, this will also allow us to give her food when she is sick and does not want to eat, or wants to spit out her necessary medicines.
Until Aubrey is able to take medications that are FDA approved (Orkambi is available for patients 12 and older), she is able to participate in a clinical trial, or until a cure is found, Aubrey will continue with her daily airway clearance treatments, which consist of an inflatable vest for 30 minutes twice a day (The vest vibrates at a high frequency which helps breakup the mucus in the lungs), she takes multiple inhaled medications through a traditional inhaler, as well as through a nebulizer twice a day. Along with the airway clearance, she must also take pancreatic enzymes prior to every time she eats or has a snack to break down the food that she eats, and multivitamins once a day. On top of this she also must take two different medications to help with her reflux.
To anyone that has been lucky enough to spend time with Aubrey, knows that she is truly an inspiration to be around, she fights this disease everyday as if nothing was wrong, she is usually always smiling or laughing even if she is sick. Every day I wish that I could switch places with her, but I know that is unrealistic. What we can do though is advocate for her and help fund additional research which will find a cure.
If you could please find it in your heart to donate, Aubrey, the other 70,000 CF patients, and their families would greatly appreciate it.