Once and a while in our crazy and busy worlds really special things happen and remind us that little people change BIG things. Madeline will forever be my little kindergartener… but she continues to change BIG things. She sends strength and confidence to share her story, she sends connections to change childhood cancer and she sends families that need us.
Recently I was connected to the Pediatric Brain Tumor Foundation to partner for their events here in New York and their special event in Boston on October 1. The Starry Night 8.5K is a family walk or run to honor the 28,000 children in the United States with pediatric brain tumors and remember the ones who are no longer here. This event in Boston is filled with children who are fighting right now, the ‘STARS’ of the night. Madeline will be a Star, we were invited to set up a table and share Madeline, her story beyond cancer- Madeline. I am excited, I can’t wait for October 1. I miss Madeline so much, but sharing her and bringing her along on adventures and talking about her keep her right here with me. I know she is proud that her story not only helps families right now with needs and memories, but it helps create the change that is needed in research and funding. Someday… this is going to change.
The Pediatric Brain Tumor Foundation is the largest nonprofit funder of childhood brain tumor research. They help fund the studies that are going to change this for many kids and families in the future. The Starry Night event we will have special ‘Starry Night’ Maddie’s Elephants to sell and grow the herd. I have been gifted an opportunity to speak at the event, to share Madeline and our journey. I know it will be hard to write and share in the presence of so many families fighting now or missing their lovely. I hope to deliver Madeline’s story and our journey and hope right alongside the struggle and hard that the words “Your child has DIPG” has brought into life. In one moment our world was broken and changed… and we are now forever aware of childhood cancer and brain tumors.
Starry Night will be night to connect and share and celebrate and miss and thank and remember my daughter, kiddos fighting now and the ones who are gone. I am beyond honored that we have this opportunity to use our voice and mission, our message and knowledge in this partnership. I get to show off my lovely and try hard to change things, partnered with many others working hard to change cancer all the way. I will get to stand and speak to many who wish and pray and work for a day when a parent doesn’t hear the words “your child has cancer”…
I am excited to see runners and feel the energy, to stand and share, to feel my missing in a pool full of amazing people who understand it. I wish my daughter had a longer book to write, one that didn’t include killer cells growing in her brainstem, but this is our story. I will carry the energy from that crowd, those runners, the STARS and the experience along with the knowledge that my Little Madeline is changing BIG things, always has and always will.
Please follow this journey- with Maddie’s Mark Foundation and the Pediatric Brain Tumor Foundation… on this page and through Facebook. Send prayers and energy for big change… if you can come run, enjoy the night or donate.
❤ I love you Madeline Elizabeth Musto, know you are changing the world in big and little ways…