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Friday, Aug. 31, 2007, was a beautiful, warm and sunny day. In her home, with lights dimmed, 7-year-old Tess died in her daddy’s arms, surrounded by her adoring family and friends.
Her family has so many precious memories of Tess – combing her long hair, teaching her the ABC's and lying in bed with her, singing songs and reading her favorite books. Tess loved pink nail polish, giggling, horses and butterflies. She wanted to be a mom and a teacher when she grew up.
Tess was born with cystic fibrosis, a genetic disease that causes sticky mucus to build up in organs like the lungs, digestive tract and other areas of the body. It is life-threatening for many.
Tess’ mom, Tracey, brought her to the Cystic Fibrosis Center at Cincinnati Children’s for treatment. When it was clear that her disease was progressing quickly, Tess became a patient of StarShine Hospice.
As the region’s only exclusively pediatric hospice program, StarShine Hospice focuses on the unique medical, emotional, spiritual and psychological needs of terminally ill children and their families. Our staff provides a wide array of services while continuing to research and learn more about what helps children and their families during this delicate stage of life.
The services StarShine provides are possible because of generous donations and community support. Arnold Barnett is CEO of Creative Dimensions, a full-service advertising agency that supports StarShine Hospice through corporate contributions. Arnold is a member of the StarShine fundraising board and chairman of StarShine’s annual golf classic, one of StarShine’s largest fundraising events.
“I’ve been blessed to be successful in my life, and I believe when you take something out of the pot, you put something back in,” Arnold says. “Contributing to a program like StarShine helps give back to the ones who need it most.”
The StarShine Hospice Golf Classic raises about $90,000 each summer for the hospice program. It attracts some of the region’s top entrepreneurs and philanthropists.
The partnership of donors is vital to support the holistic care StarShine provides. The cost for a child in hospice is generally around $500 a day, but less than half is reimbursed through insurance.
“In the past two years, we’ve seen a 45 percent growth in hospice patients in our care,” says Susanne Cassidy, clinical director of Private Duty Nursing and StarShine Hospice and Palliative Care. “It’s because of the leadership of our fundraising board, and people like Arnold, that we are able to provide these services.”
Tracey says her experience with StarShine helped her get through the toughest time in her life.
“I am so thankful for the StarShine Hospice staff. The nurses were so kind when they came to my home to help me administer Tess’ medications or to complete lab work so she didn’t need to go to the hospital,” she says. “They gently and compassionately explained to us what to expect as Tess drew nearer to passing away. During Tess’ final hours, I felt strength and assurance from the StarShine staff as I held her in my arms. They let me know I wasn’t alone.”
Arnold Barnett, in yellow, is chairman of StarShine’s annual golf classic, which raises about $90,000 for StarShine Hospice each year.
If you have had an experience with Cincinnati Children's, we invite you to share your story.
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