17 Dec Benji
The Cullere’s lives changed forever when their son Benji, just 15 months old, was diagnosed with MPS1 Hurler Syndrome. This rare genetic disorder meant his body couldn’t produce a crucial enzyme, leading to serious health complications. The news was devastating, but the Cullere’s knew they needed to spring into action and fight for their son.
Benji underwent enzyme replacement therapy and a challenging cord blood transplant at the Children’s Hospital of Philadelphia, offering the best chance of delivering the vital enzyme to all parts of his body, including his brain. However, recovery was a long and complicated, filled with numerous hospital visits, surgeries, and intensive therapies.
During these difficult times, the Ronald McDonald House became their “home-away-from-home”. It offered a place of comfort and support, allowing the Cullere’s to stay close to Benji while he received treatment. “At the House, I don’t have to pretend I am alright if I am not. I can just feel what I feel. Not worrying about logistics of meals or entertaining my son allows me time to focus on other things, including myself.” Benji’s mom, Tamara recalls.
Tamara shares that it can be easy to focus on the child who has the disability or who is dealing with medical issues; however, it is equally important to remember that the siblings go through their own journey with the disease as well, even if they are not physically affected by it. “I love organizations that not only acknowledge the siblings and their roles on the journey but also include them. RMHCGDE is inclusive of all family members and I love that about the House.”
While at the House, Benji loved the playroom, exploring the treasure chest, and interacting with other children, some facing similar challenges. The Cullere’s loved meeting other families on similar journeys, sharing stories, offering support, and finding strength in each other’s experiences.
These encounters and connections fostered valuable conversations about inclusion and acceptance, and provided a renewed sense of hope for the family. Hurler Syndrome does not have a cure. Tamara’s hope for her son and her family is to find joy every day and to focus on the good memories even through the hard times. “I want my children to be kind and accepting, especially with all the kindness and acceptance that has been shown to us. We want to instill in them the importance of kindness, compassion, and acceptance, inspired by the support and understanding we have received from the Ronald McDonald House community.”