Kyla is a mentor for parents caring for a child with a bleeding disorder, such as hemophilia. She also has experience with port-a-cath management, coping in the hospital, and child life services.
I am a mother of a child with hemophilia and a certified child life specialist. My work gives me experience helping children cope with medical experiences and diagnosis. My experience as a mother gives me knowledge about bleeding disorders and how to stay connected to the bleeding disorders community. Our family is now very knowledgeable about tricks and tips for children with bleeding disorders. My son has a port-a-cath that we access at home three times each week to administer medicine. After my husband and I were trained, my mother was also trained to administer medicine in case of an emergency. Our son having hemophilia is a regular part of our everyday life.
I chose to become a mentor because I remember how overwhelming everything was when we first got our son’s diagnosis. I knew nothing about hemophilia and felt so ill prepared. A few other moms took me under their wings, exchanged numbers, and encouraged me to ask questions at any time. That was a huge relief to me and I still rely on them to this day! I hope I can help someone else as they manage stress after their child’s diagnosis.
Caring for a child with complex medical needs can be complicated and overwhelming. Support from someone navigating similar challenges can make all the difference.