Five-year-old Madeline E. Maddie Musto is still smiling.
That is what her mother, Erin, said she believes, even two years after Maddies death.
I cant imagine people forgetting Madeline, Mrs. Musto said. Its like her spirit cant go away. I love to share her.
Maddie died Feb. 8, 2012, of diffuse intrinsic pontine glioma, a rare tumor in her brainstem. Since then, the Musto family founded Maddies Mark Foundation, to ensure that children in life-threatening situations dont have to worry, for just one day, about being sick or dying.
Mrs. Mustos family, her husbands family, friends and community members gathered Sunday at the Bruce M. Wright Memorial Conference Center, 1291 Faichney Drive, to participate in Maui for Maddie, a fundraiser to benefit the foundation and one of its Best Day Ever alumni. A portion of the proceeds, Mrs. Musto said, will go toward travel and medical expenses for Lyme Central kindergartner Mylee Blaha, who is battling leukemia.
According to the foundations website, Maddies Mark actively encourages child enrichment, through financial grants to improve public and private entertainment and educational and athletic facilities for children. Maddies Mark honors Madelines legacy and love of learning through a scholarship program, to provide meaningful and significant financial assistance to remarkable young women.
We all are going to face hard things in life, Mrs. Musto said. I miss Madeline terribly, but I know shes OK.
She said she felt Maddies infectious smile Sunday, as she looked at the faces of people in the crowd and saw how much joy the luau-style party brought to them. Children and adults gathered around arts and crafts, a variety of games and a photo booth, and children mimicked dance moves by various performers.
All of that, Mrs. Musto said, is to have attendees feel as if they, too, are part of a best day ever for them.
Last year, the inaugural major fundraiser had a Mardi Gras theme. After Maddies Mark Foundation granted Chaumont resident Brenna Flynn her best day ever with a luau-themed 1st birthday party last year, leftover decorations inspired Sundays Maui event.
Brenna, now 18 months, and her mother, Kiley J. Taylor, attended to lend a helping hand.
Its our way to give back, Miss Taylor said.
She grew up with some of the event organizers, who happened to be sisters of Mrs. Musto, a 2000 graduate of General Brown Central Junior-Senior High School, Dexter.
Maui for Maddie was a way to remind attendees to enjoy all of the times with people you love while you can.
Its important they all leave here with a fun experience, Mrs. Musto said.
That is because shes learned a lot about grief, she said, and she thrives on seeing all of the joy that comes from people coming together in Maddies memory. She said that doesnt take away from the fact that her other daughters Amelia J., 7, and Lucy M., 5, and husband, Matthew, see her sad, and are sad themselves when they reflect on Maddies death.
They just miss her, Mrs. Musto said.
So do many of the several hundred people who were expected to attend Sundays event. One of those people was Sherri A. Delano, a family friend who lives in Dexter.
Watching the community come together is so amazing, and to let other families out there know theyre not alone, she said, as she took a break from activities with 3-year-old daughter Ava R.
For more information on the foundation, visit www.maddiesmark.org.