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A joyful noise: Young suburban cancer survivor’s story inspires new music

Two years ago, Kamila Santiago and her family got terrifying news: The Lake in the Hills girl, then 10, was diagnosed with osteosarcoma, a malignant bone tumor on her left leg.

Surgery and chemotherapy followed. After a year, doctors declared Kamila cancer-free.

Last year, the now 12-year-old wrote about her experience in cooperation with Sing Me a Story, a nonprofit organization that offers children who face serious health issues, loss or homelessness opportunities to write and illustrate stories which composers, most of them volunteers, then set to music.

“Kamila's Story,” by composer Benjamin Martin and commissioned for the Lake Forest College chorus and orchestra, premiered last week in Lake Forest.

  Twelve-year-old cancer survivor Kamila Santiago, of Lake in the Hills, wrote about her diagnosis, treatment and recovery in “Kamila’s Story.” Composer Benjamin Martin set her story to music which the Lake Forest College Band, Orchestra, and Choir premiered last week in Lake Forest. John Starks/jstarks@dailyherald.com

Santiago, her family and their pastors attended the performance.

“I was really excited,” said the Heineman Middle School seventh grader who sings in the choir and plays saxophone and ukulele.

Hearing her daughter's story set to music overwhelmed Tania Santiago, Kamila's mother.

“I can't even describe it. I was so emotional,” she said. “Everything was perfect. This was an unforgettable night that will live forever in our hearts. We want to thank everyone who was involved in doing this for her.”

It all began last year when Sing Me a Story, in cooperation with the Make-A-Wish Foundation, invited Kamila to share her experience.

“I said yes because I want people to know about the miracle in my life,” she said.

The storybook, which she completed in December, begins the day she discovered a bump on her leg during gym class and covers the agonizing weeks that followed as the family waited for a diagnosis.

“Putting in everything that happened is really important,” she said. “It's important to add all those little details.”

  Twelve-year-old cancer survivor Kamila Santiago, center, chronicled her story in a book titled “Kamila’s Story,” which composer Benjamin Martin later set to music. Photographed in their Lake in the Hills home are, from left, father Jonatan Santiago, sister Grace, Kamila, sister Johanys and mother Tania Santiago. John Starks/jstarks@dailyherald.com

Among the details were references to the chemotherapy that made her nauseous and caused her hair to fall out; receiving a puppy from the Make-A-Wish Foundation; the “sassy queen” nickname nurses bestowed on her; the unwavering support from her parents, sisters, schoolmates and faith leaders; and her faith in God for answering her prayers.

After Lake Forest College expressed interest in participating in Sing Me a Story, director of operations Autumn Dobbeck contacted Make-A-Wish, which had nominated Kamila Santiago.

Founded in 2011 by songwriter Austin Atteberry, Sing Me a Story has produced about 1,100 works since 2013. The organization encourages youngsters to write about anything they want to write about, said Dobbeck.

“Kamila was adamant to share her cancer journey. It was special to hear her be so open about it,” said Dobbeck, who forwarded Santiago's book to Martin, a University of Chicago music composition graduate student.

University of Chicago music composition student Benjamin T. Martin composed the choral/orchestra piece “Kamila's Story” inspired by the cancer recovery journey of Lake in the Hills 12-year-old Kamila Santiago.

“I was moved by her (Kamila's) maturity … her sense of joy, faith and integrity throughout this incredibly life-altering experience,” he said.

Drawing inspiration from the Santiago family's faith, Martin — aware that her family speaks Spanish — included a Spanish translation of Psalm 121, which begins: “I will lift up mine eyes unto the hills, from whence cometh my help./My help cometh from the Lord, which made heaven and earth. He will not suffer thy foot to be moved: He that keepeth thee will not slumber.”

Martin was determined to honor Santiago's bravery and resilience in the six-minute choral/orchestral piece.

“It's a joy to work with an ensemble this big for a project this special … It's quite rare, in a good way,” he said.

“It was important to make the piece more about her than about me,” he added of the music, which he describes as classical concert music “but maybe sassier.”

Martin hopes “Kamila's Story” serves as “a reminder that there is light to be found even in moments of darkness.”

For information on Sing Me a Story, see singmeastory.org.

Members of Lake Forest College’s orchestra and chorus premiered “Kamila’s Story” last week at the Gorton Center in Lake Forest. Courtesy of Lake Forest College
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