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ABOUT KIDS SHOULDN'T HAVE CANCER FOUNDATION

Jonny's Story

In December of 2014, Jonny was looking forward to Christmas with the anticipation and excitement you would expect from a 7-year-old. He lived in Jerseyville, Illinois, with his parents, twin brother Jacky and the family dog, Lucy. He loved first grade, spending time with his many friends and playing video games with Jacky.

A week before Christmas, Jonny got a headache at school. It went away, but it was bad enough that he mentioned it at home. His headaches continued, then got worse, and in the span of just eight days, he was diagnosed with a malignant brain tumor. Just days after Christmas, Jonny underwent a five-hour brain surgery to remove as much of the tumor as possible.

Over the next year, Jonny endured four more brain surgeries, as well as eye surgeries, surgical port accesses, feeding tube insertions, radiation therapy, and more scans and needle sticks than the family could count. He constantly had tubes in his nose, chest and, later, in his belly.

He was in pain

He suffered radiation burns, fatigue, daily nausea, vomiting, spinal headaches and the emotional pain of spending your days in the hospital instead of playing with your brother and friends.

He was afraid

But as his body got weaker, his faith became stronger. He dealt with incredible pain and suffered greatly, but despite it all, he remained positive – even going so far as to put others before himself.

"I don't want any other kid to have cancer, "Jonny said one day.

On Christmas Eve, Jonny passed away in our home as we held him in our arms. Despite his treatments. Despite our prayers. Despite it all.

Through this, we came to believe that while thousands of people prayed for a miracle to heal Jonny, Jonny himself was the miracle. He healed thousands by showing the strength of his faith in the midst of his weakness, and the Kids Shouldn’t Have Cancer Foundation exists solely to carry on this purpose.

The Current State of Pediatric Cancer

  • Cancer is the second-most common cause of death – and the leading cause of death by disease among children.
  • Well over 10,000 children in the United States under the age of 15 will be diagnosed with cancer in 2018.
  • About 1,250 under the age of 15 are expected to die from cancer in 2018.
  • At age 40, survivors of pediatric cancer are twice as likely as the general population to develop a second cancer.
  • Thanks to advancements from pediatric cancer research and participation in clinical trials, the mortality rate for some pediatric cancers has decreased by more than 50 percent since 1981.
  • The five-year survival rate for infants with cancer remains lower than that of pediatric cancer patients age 1-14. However, that survival rate climbed from 22 percent in 1975 to 62 percent at the turn of the century.
  • Most pediatric cancers are a result of DNA changes early in life, even before birth. They’re only rarely linked to environmental risk factors.
  • Since 1990, fewer than 10 drugs have been developed to treat pediatric cancer, compared to more than 200 for adults.
 

only 4%

of NCI research funding is dedicated to pediatric cancer.

That's
not okay
with us.