A mother's story: Luigina
Luigina’s late son Joseph was diagnosed with a diffuse intrinsic pontine glioma (DIPG), a tumor in the part of the brain that controls many basic functions like breathing and swallowing and affects speech and eye movements. There is currently no effective treatment for these aggressive tumors.
“Before Joseph was diagnosed at 17, I was working part-time as a childcare worker and was the PTA President at Joseph’s high school. Joseph was an active teenager and played soccer on his high school team in Queens.
In July of 2020, Joseph kept losing his balance and I thought he had a bad ear infection. It was a shock when we got the terrible news that he had a brain tumor. At that point I had to stop working to care for Joseph. Soon after, I was coming up short every month for our household bills. I looked at a DIPG group on Facebook to see if any parents had posted other resources. I found information about Friends of Karen and filled out an application. Soon after, they assigned Rhonda to be our social worker.
Friends of Karen’s support helped pay travel expenses to Joseph’s treatment, before I arranged Access-A- Ride, and in emergencies afterwards. They helped us pay for clothing, Joseph’s medical expenses that insurance did not cover, and helped with our rent. Things got tough fast, so having Rhonda by our side was important for us. Joseph’s tumor was aggressive, and he became less independent. Over time he could no longer walk, feed, dress or bathe himself. I was devoted to his care around the clock because he did not want anyone else to help him but me.
As a mom you will do anything to take care for your child. Still, it was very stressful, and I am grateful that I had Rhonda to talk to. I could talk to her about things we were going through and that were hard to speak about. During Joseph’s illness Rhonda made sure he and his sisters Rosemarie and Alexis got to celebrate their birthdays and had gift cards to buy something special. Rhonda even arranged for Joseph to have his 18th birthday party at a local restaurant, and to attend a professional wrestling match, which made him very happy.
Rhonda was there to support our family emotionally after Joseph passed in November 2021, and Friends of Karen even helped with some of the cost of Joseph’s funeral. When Friends of Karen began hosting a monthly online bereavement group for parents, Rhonda encouraged me to participate. I wasn’t sure I would feel comfortable in the group, but over time I saw it was helpful for me to share our story. Losing a child is like no other loss and the other parents in the group understand what that is like.
Looking back, I know that without Friends of Karen’s help we would have become homeless. I am thankful Rhonda was there for anything we needed and listened to me whenever I needed support. Most of all, I am grateful that they brought Joseph comfort and happiness in so many ways.”