Sara Talks about Vines & Vibes
August 26, 2018
Maddie is a 15-year old with Primary Immune Deficiency Disorder, a serious and chronic genetic condition with no cure. Having PI means that she no longer participates in many of her favorite activities nor does she attend school full time due to chronic infections accompanied by severe fatigue. Each month, she endures an infusion of donor IGG to supplement her body’s deficiency. She is an advocate for others living with with the diagnosis and has started her own website and organization called Maggie’s Herd: https://maddiesherd.wordpress.com/
We were happy to send Maddie to Ed Sheeran’s concert recently in CT where she had VIP seats and the opportunity to meet Ed back stage.
“Everything about the evening made us feel special from the fun t-shirts and temporary tattoos, to the one-on-one time with Ed Sheeran, to the 4th row seats,” she said. “Yet, one of the coolest parts of the night was walking through the backstage and being offered to play one of Ed’s guitars. It was like coming into contact with greatness.”
“Sometimes it’s hard to imagine a life where I can do anything I want to do. Having to rely on a Plan B because of the unpredictability of my health can be distressing. Nights like the concert with Ed Sheeran are a great reminder that I am living with sickness not as sickness, and that there are still a lot of great experiences out there for me. It’s ok to wish, because sometimes wishes come true.
I was listening to Ed Sheeran long before others knew his name, from way back in 2009.
Meeting him was a fantasy that became a reality and, now, is an amazing memory!”
She created a video to commemorate the experience and gave Ed the opportunity to speak to Robby, another wish grant recipient living with bone cancer, who was unable to attend the show at the last minute.
Maddie’s mom kept this wish grant secret from Maddie, noting: “Being able to reveal the news of this magical secret offered the opportunity to show Maddie that not all mysteries are bad news; and that sometimes they’re down right miraculous! A life lesson wrapped in joy – it doesn’t get much better than that.”
Keep fighting, Maddie! And keep working to spread the word about living with a chronic illness without letting it get you down.
Special thanks to our wish grant Fanbassador Krista for supporting this experience!