Honestly, I wasn’t sure that Angels for Change could help because we are not located in USA, but they really did a wonderful job in no time.
Gavin started showing symptoms early on in life. Years of seeing specialists and countless tests and imaging only led to more questions. Our local team applied to the Undiagnosed Disease Network, and Gavin was soon accepted. During our stay at Duke University Hospital, a genetic test revealed a tiny mutation on the NLRP3 gene that was causing uncontrolled systemic inflammation.
Brannon’s treatment involved so many hospital visits and chemotherapy sessions. It is so hard to watch your child go through cancer treatment. This terrible crisis was made worse when a few months into treatment Brannon faced a chemotherapy shortage that disrupted her care.
During treatment, he had lots of obstacles and hurdles that he had to overcome, including several drug shortages. Our son faced 4 drug shortages during his treatment. Each one created a lot of fear and uncertainty that he was not going to be able to get the medicine he needed.
As parents, we lost the ground under our feet. How can crucial medicines for treating children suffering from cancer not be available? How do hospitals specialized in treating kids not have alternatives or a mechanism to prevent these kinds of shortages? Why do patients, like us, basically depend on one source supplying this medicine?
My name is Aileen and I am married to my husband, Nick. We both work and live in the Boston area with our almost 3-year-old daughter. We are a very typical family and enjoy a love of the outdoors and traveling with our little girl. She loves spending time with her family and friends and her most beloved cat, Belle.
