Here is our family story and why we started Namastay Believin'. Matthew, my first born, at three weeks of age had supraventricular tachycardia which is a rapid heartbeat of more than 320 bpm. At three weeks of age, he was diagnosed with whooping cough; at three months of age; viral meningitis at three years of age. Just six months later at age 3.5; he was diagnosed with ALL Leukemia and had more than 800 hospital stays during his 6 years of treatment. Matthew had endless spinal taps. He also had a very compromised immune system and would miss many days each year of school due to illness. Since his teen years, he’s had a higher than normal bilirubin count, and a deteriorating spine similar to that of a 70-year-old coupled with complex blood issues.
Brooke; my middle child; began having neurological and severe psychiatric issues at the age of 14. As a kid; Brooke loved to have lemonade stands, she had a library set up in our basement and loved to teach school to the neighborhood kids. Entering her teen years; Brooke had many hospital stays and saw various doctors regarding her condition. She was plagued with learning complications throughout high school. Her issues were very challenging and her doctors had no explanation for her not having depth in her brain. This all lead to her passing at the young age of 19.
Brianne, my youngest, was diagnosed with a rare brain tumor at the age of 5. She also had a severely compromised immune system, and would also miss many days of school a year due to complex health issues. She has had several bouts of acute pyelonephritis, rashes that appear like bleach stains, frequently swollen glands, pneumonia, staph several times, liver infection, mono, strep, and has turned septic on several occasions. Her body would shake uncontrollably for an 1.5 hours and was close to complete organ failure. Septic can be hard to diagnose and can be quite deadly. This was incredibly scary. I watch her closely now; due to the sudden and accelerated onset of health conditions.
Two years ago; I was diagnosed with colon cancer and was in critical condition. One year ago, I was diagnosed with skin cancer. Currently, I have gained new insight on work-life balance coupled with changing my lifestyle. I am grateful to be in remission.
All of this occurred due to an extremely carcinogenic water supply in Illinois. Our story is a reason why clean water is incredibly important for all Americans.
A diagnosis of cancer to a child is incredibly painful to absorb and never convenient. According to the National Cancer Institute in 2017; an estimated 10,270 children will be diagnosed. Our goal is to give every child diagnosed with cancer an overnight backpack across the United States.
Throughout all of our endless overnight stays at the hospital; it has been a dream of mine to simply have a magic wand. This would be magical to take away all the pain and suffering of the children in the pediatric ward.
In honor of my daughter Brooke; we have launched Namastay Believin' to inspire, give hope and faith to all children fighting cancer while on their journey.