Honored Kid

Benny W.

Benny W. Kid Photo

Location

Lake Forest, IL, US

Diagnosis

Brain or spinal cord tumor

Date of Diagnosis

January 2008

Status

Angel

Treated At

Ann & Robert H. Lurie Children's Hospital

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My Story

Benny was a happy, independent and active sports loving little guy. He loved going to school and playing his Wii and Nintendo DS. (He was determined to save the princess on Super Mario Bros.) Benny also loved going to art class, gymnastics and he was a white/orange stripe belt in Karate. Benny was a member of the Lake Forest College Football team, he was adopted by the team thanks to the Friends of Jaclyn Foundation, he loved his "big brothers". Benny was diagnosed with a brain-stem tumor (Diffuse Intrinsic Pontine Glioma) on January 18th, 2008. A Diffuse Intrinsic Pontine Glioma (DIPG) is a tumor located in the pons (middle) of the brain stem. The brain stem is the bottom most portion of the brain, connecting the cerebrum with the spinal cord. The brain stem contains all of the "wires" converging from the brain to the spinal cord as well as important structures involved in eye movements, face and throat muscle control and sensation. Because of the tumors location it is inoperable. Chemotherapy treatments have also failed to make any significant impact on DIPG because of the blood brain barrier. The only standard treatment available for DIPG is 6 weeks of radiation which often dramatically improves symptoms, however, problems usually recur after 6 to 9 months, and progress rapidly. The median overall survival of children diagnosed with DIPG is approximately 9 months making it one of the most devastating pediatric malignancies. Benny passed his two anniversary in January 2010 but unfortunately the tumor continued to grow. Since Benny was diagnosed he underwent 6 weeks of radiation, participated in 5 clinical trials involving chemotherapy agents and in January 2010 he underwent brain surgery to relieve symptoms of hydrocephalus. Despite his treatments he continued to love life and keep us entertained. Our sweet, sweet Benny passed away peacefully surrounded by his family on September 8th, 2010. Fly Benny, fly.................... Thank you for helping to further research to help all children affected by pediatric cancer, research gives us hope that one day we will find a cure. Love Benny's Family.

The Childhood Cancer Ripple Effect

Who's Honoring Me

  • participant

    Rosie R.

  • participant

    Jeff Close

  • team

    Rosie's Rock Stars 2018

  • event

    Woodstock Community Shave for the Brave 2018

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