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Madeline Musto’s memory helping children have ‘best days ever’

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Little did 5-year-old Madeline E. Musto know that after she died of a rare brain tumor she would leave her mark throughout the state.

Since her death Feb. 8, 2012, the Musto family has created Maddie’s Mark Foundation to ensure that children in life-threatening situations don’t have to worry, for just one day, about being sick or dying.

Maddie’s mother, Erin, a 2000 graduate of General Brown Central Junior-Senior High School, Dexter, said Maddie’s temperature spikes, anxiety, stomach cramping, headaches and dizziness began in November 2011. The family thought it was because of night terrors. Maddie would periodically feel ill, but then get better.

On a visit to see family in the north country in December 2011, the Mustos, who now live in Guilderland, stopped at a restaurant in Lewis County. It was right around Christmas, and the place was packed. The family sat down for a meal, Mrs. Musto said, and with that family time, combined with the spirit of the holiday season, her daughter looked at her and said, “Best day ever.”

Despite the cycle of illness, the Mustos focused on bringing that joy to the family, especially Maddie. In January 2012, however, Maddie spent a lot of time at home and missed school. Mrs. Musto said she knew then that something was truly wrong with Maddie — she loved school, and was focused on learning even outside the classroom.

“She told me lunch and gym bothered her,” Mrs. Musto said. “She couldn’t chew well, and in gym class she had dizzy spells and couldn’t walk. She thought it was funny she was running into things, but then she was scared.”

Maddie’s doctor said hydration problems were the cause. Soon after that appointment, Maddie couldn’t tie her shoes or button her cardigan.

“We needed a consult,” Mrs. Musto said. “Probably on Feb. 1 we went to Albany Medical’s emergency room. They did blood work and a CAT scan. They were pretty puzzled, too.”

The scan showed a discoloration in the back of Maddie’s brain, “but it wasn’t enough to look like a tumor,” Mrs. Musto said.

An MRI was completed, and the next morning the Musto family received the news that Maddie was dying of diffuse intrinsic pontine glioma, a rare tumor in her brainstem. According to the National Cancer Institute, the central nervous system tumor forms from supportive tissue of the brain and spinal cord.

Physicians suggested palliative care to help ease Maddie’s pain and give her comfort.

The family left the hospital Feb. 3, 2012, as Maddie’s body began to shut down. Mrs. Musto and her husband, Matthew, formerly of Watertown, decided Maddie would spend whatever time she had left with a smile on her face. They redid her room, held a First Communion celebration and spent time with family at Lake Placid until Feb. 6, when Maddie’s tumor started to bleed. The next day, she was sick, and was rushed to Albany Medical. She died Feb. 8, on what would have been her 100 days of school celebration.

Tragedy, Mrs. Musto said, has been turned into triumph. Both of the Mustos’ communities — around Watertown and Albany — held benefits when Maddie was sick to help the family with related expenses. After Maddie died, benefit money was left over, so the Mustos started Maddie’s Mark Foundation. The foundation has one goal: to give children in situations similar to Maddie’s their best day ever.

“Part of my goal is to help them survive and enjoy time,” Mrs. Musto said. “It might sound like a little thing to go somewhere with your family, but it’s not a little deal. It’s a big deal.”

With the foundation’s support, children throughout the state have had that opportunity. According to the foundation’s website, Naomi J. Gushlaw, 6, Adams Center, who has a rare form of cancer known as Ewing’s sarcoma, was able to attend a Philadelphia Phillies game, VIP style, while she was receiving radiation treatments at the Children’s Hospital of Philadelphia. A Watertown boy with an eye tumor received a family camping trip to Old Forge and Enchanted Forest Water Safari.

The Musto family, including daughters Amelia J., 5, and Lucy M., 3, will visit the north country the last weekend of the month. There will be a benefit from 11 a.m. to 4 p.m. Feb. 24 at the North Side Improvement League, 633 Mill St., to help raise funds and awareness for the foundation. Admission to the carnival-themed event will be $2 per person, or $10 per family.

For more information about the foundation, visit its website at www.maddiesmark.org.

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