This week we honor a local not-for-profit foundation on a mission to give children with cancer and other diseases their “Best Day Ever.”
Erin Musto, president of Maddie’s Mark, started the foundation with her husband and family last year in honor of their daughter, Madeline, who was diagnosed with an inoperable brain tumor at just five years old. Maddie’s family decided to take the time they had left with their child and spend it having several of the “best days ever.”
Now, they have built an entire foundation committed to making sure other children can experience the same adventures and excitement as they battle deadly diseases.
We asked Erin a few questions about her work. Here’s what she had to say:
Q: What inspired you to form Maddie’s Mark?
A: My daughter Madeline passed away on February 8, 2012, only five days after being diagnosed with DIPG, Diffuse Intrinsic Pontine Glioma, a rare brainstem tumor. In a way, Maddie’s Mark is our way of bringing Madeline and her spirit along with us. It is a gift to have the opportunity to share her and our mission to create ‘best days ever.’ The term ‘best day ever’ was actually something Madeline said to my husband and I (not long before she was diagnosed) after a simple, fun and fancy dinner out- she said “best day ever!!!!” and it made me think and remember that it isn’t the big stuff at all that we need to focus on. Her words brought us back to a simpler and less-planned life.
In a way, I feel that it was her way to prepare us and our journey.In the five days that we were gifted, after she was diagnosed, our family focused and enjoyed while the rest of the world moved mountains for us. Madeline made her First Communion, Confirmation, had professional family pictures, got her own bedroom, traveled to Lake Placid for a big family reunion and was surrounded by her favorite people. Maddie’s Mark Foundation is really inspired by the simple statement and reminder about ‘best days ever’ for normal and healthy families and those five days, with all of those mountains moved, inspired our creating ‘best days ever’ for families with sick children. We try to move those mountains and make sure it is a memorable and documented day.
Q: What do you find to be most rewarding?
A: That is hard and easy to answer. I love sharing Madeline and our family. I know this journey isn’t one most have, it isn’t one anyone wants and it is one that can make the future and present very difficult. This journey and all that Maddie’s Mark brings to us is a way to carry Madeline and her kind, compassionate and creative ways to new hearts, new people and into the future. Imagine if the world forgot your lovely and amazing child?I also have been blessed and rewarded helping families. I honestly believe that I am brought to the people I need, and they are brought to me. These families, their stories, their journey have helped me- and in some ways I know I have helped them.
Q: What are some challenges?
A: It is always easy for us to share Madeline, her story and this journey… but sometimes the biggest challenge is the cost of that gift. It is so easy for me to tell people about her, visit children, meet moms, create ‘best days ever,’ make special deliveries and go to the hospital- until I get home. It takes a lot of energy to do the things that might look easy. I love it though. I think our team loves the challenges as well. I will always do those things, even if they cost a lot of energy and bring me pain… I know I can do it. I know that the challenge is worth the cost.
Q: Do you consider yourself a hero? Why or why not?
A: It is very hard to answer this question. I see myself as the worker-bee for my heroes. I think I was made to be bossy and good at sharing. I think that is why I got my set of Musto Chicks and this journey. Most days I just get by… many days I am running on empty.
I think Madeline has given me the tools and guidance to do her work. I think my girls keep me running and moving and sharing and breathing most days. I think have had the opportunity to help many many people, so in a way I know I am doing positive work and changing things… but do I see myself as a ‘hero?’ No. I am a mom, a regular one, who is taking care of her girls–her heroes–and doing all the things that her lovely angel should be here to do.
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