Sammi is a very typical 11-year-old girl in many ways. She loves to play video games with her siblings, Matt, Amanda & Lauren. She enjoys playing with Webkinz, reading books, watching her favorite crime shows on TV and having fun with her Samantha doll. Sammie and her parents Allen and LeeAnne along with her siblings, Matt, Amanda and Lauren live in New Jersey. Sammi has immune deficiency and autoimmune disease, as well as CIPO, and other medical issues related to an unknown syndrome she shares with her brother, Matthew and sister, Amanda. Unlike most other kids her age, Sammi is TPN dependent and relies on multiple daily IV medications, frequent IVIG infusions and other medical interventions. She has frequent treatments, procedures, and hospitalizations and it takes intense work and complex coordination for her parents and medical staff in order to keep her home as much as possible.
"I try not to look ahead to what tomorrow has in store. I find my level of anxiety, worry and fear are better when I don't. I am glad I never had that crystal ball to tell me what was in store for all of my children as I don't know how I could have coped with it all to be honest. But we do cope and we are coping and we make the changes we need to and try not to look too closely on the losses ...which are continuous and too frequent. We have found in sharing experiences with other parents and families of complexly chronically ill children support, ideas, comfort, and validation. It is helpful to talk, laugh and share with others who get this different 'normal' life and not feel so isolated or alone in our day to day struggles to care for and raise our precious children."
- LeeAnne, Sammi's Mom