At just five months old Carina from Westchester County, NY was diagnosed with Hemophagocytic Lymphohistiocytosis (HLH), an immune system disorder causing damaging inflammation and multi-organ failure. Carina received chemotherapy and a bone marrow transplant to treat her HLH.
As a result of the transplant, Carina developed severe Graft-Versus-Host Disease that occurs when the donated cells attack the recipient’s cells and cause lifethreatening issues. Carina’s condition required a lengthy hospitalization and treatment for eight years.
Carina’s mother Noel connected with Friends of Karen and was paired with our social worker Beth. Friends of Karen provided years of support to ensure Noel, Carina and her older sister Ava remained stable, functioning, and able to cope.
Noel is a single parent and not being able to work while she cared for Carina had a big financial impact on the family. Friends of Karen provided financial assistance to make sure Noel could pay for necessities like her cell phone bill and clothing, as well as illness-related expenses that included car expenses and gasoline to get Carina back and forth to treatment.
A child’s life-threatening illness is emotionally wrenching for the ill child and every family member, so Carina’s family received ongoing emotional support from Beth. Ava participated in our Sibling Support Program to help her build coping skills and resilience by working with Melissa, one of our Child Life Specialists. Friends of Karen made sure that Carina and Ava never missed a milestone occasion – they received wished-for holiday gifts, birthday gifts and back-to-school backpacks filled with supplies for each new school year.
Today, Carina is eight years old and is still seen by doctors at the clinic and on daily medications for maintenance because of the complications from her bone marrow transplant. Her mother Noel recently reflected on how Friends of Karen made a difference for their family’s wellbeing.
“Friends of Karen has played such an important role not just for Carina, but for all members of our family during Carina’s challenging journey with her HLH and her bone marrow transplant,” Noel said. “Friends of Karen truly is an organization that makes every member of the family feel special, especially Carina’s sibling Ava. We will always be eternally grateful for all they have done for us during these most difficult times.”