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Childhood Disease: Help Wanted

Updated on July 12, 2012

Justin, age 2

Justin is still in the battle with JMML.  He is brave and shows a love for life.  Justin's Army has become the team of support for him and his family.
Justin is still in the battle with JMML. He is brave and shows a love for life. Justin's Army has become the team of support for him and his family. | Source

Who Makes a Difference in the Life of a Sick Child?

Everyone wants a child who is healthy and whole. I remember the first thing I did when I gave birth to my children was to count the fingers and toes. My family personally, in many areas, has been touched by congenital maladies and childhood illnesses. For most people, birth defects and childhood disease will never fully darken the doors. However, for those of us that have been struck with childhood disease, it rings in the soul for a lifetime and transcends through generations. This has touched me personally and touched many of my family, friends and co-workers.

We Need to Fight Congenital Birth Defects

I look back at my own mother. She was born with a plugged aorta. With every doctor's visit, she was told to fulfill her life but remain in confinement, for she would not live long. She was told to stay in bed -- but yet her heart yearned to run and play. At night, she would ignore the advice of her parents and the doctors. She would, instead, get up during night to run, play and explore the world around her. This exercise helped her little heart continue build the muscle and open other arteries to compensate for the plug in her aorta. Later, just prior to her marriage to my father, she was offered an opportunity to be a part of a medical research program for one of the world's first open heart surgery recipients. Much of this research was funded by Mr. Walt Disney. It was the power of scientific research and the stubborn will to live that gave her nearly 67 long and beautiful years. My mother, and the life-saving measures made possible from funding medical research, was a tribute to what fighting congenital birth defects can do.

Childhood Diseases of the Past and Present

In the past, many diseases caused early death or diminished physical health. Polio was a common illness that struck the nervous system and caused paralysis. Chicken pox and influenza killed many children leaving parents with empty arms and often visited headstones. Aneurisms in children that change longevity with no remedy leave parents confused and upset. Congenital birth defects of the heart, or bone structures may leave children physically disabled or requiring surgeries for corrections. All of these have struck personal chords in my life in one form or another. Some of these diseases have been nearly eradicated, while some diseases have only recently been discovered. Some of these recently discovered diseases have been found in forms of cancers. The onset of cancer strikes fear in the strongest of hearts. Tragedy is hard no matter what age it comes. However, how painful is the thought that cancer or childhood disease takes a child home before adulthood.

What Can Be Done?

We all need a Walt Disney in our life. For my mother, she would have never become a mother, grandmother, kindergarten teacher or friend without the hope and funding provided by Mr. Disney. For many reasons, when I was a child, we were heavily involved with Shriners Children's Hospital who are dedicated to help children in need. The medical discoveries are continuing -- including better diagnosis and improved research, even more specialized foundations have been formed. With all these dedicated avenues of life-giving hope, there is a debt and gratitude to the benefits of research and medical interventions. Our modern day world has birthed a plethora of foundations and programs to assist most forms of disease and malformations. It is finding and supporting these gems of life-giving research that can make a difference in many people's life. Simple acts of funding could make the difference between life and death for a future mother or father-to-be.

Justin's Army

Justin, age 1, was diagnosed with a rare form of leukemia, juvenile myelomonocytic leukemia (JMML). JMML is cancer of the blood. This type of leukemia tends to strike children under the age of five. Treatment varies widely as it is still under development and in clinical trials. Part of Justin's treatment is the need for bone marrow transplants. These transplants can give both parents and children great hope. According to the JMML website, approximately 50% of children treated with bone marrow transplants achieve long term remission of leukemia. This brings hope to many who are walking through this long and difficult journey. These treatments require more research. The JMML Foundation is dedicated to finding the cure, but they cannot do this without the help of donations. Currently, Justin's treatments are ongoing at the Children's Hospital of Philadelphia. So far, the family sees hope. Our desire is this hope can continue to bring improvement in Justin's life and other young people who are sick.

Kohl Benjamin

In 2006, Kohl Benjamin was diagnosed with a Ewing's Sarcoma, a rare form of cancer. Surgeries, chemotherapy, and persistent treatments have given Kohl life. Funding from places such as the Professionals Miracles Foundations. They have assisted in providing funding to fight this horrible disease. In addition to foundations like this and much like the Shriner's Hospital, the Children's Hospital Colorado helps the young fight disease, birth defects and physical ailments in the hope of overcoming the illness in their lives. Kohl understands the importance of fundraising. He even works at bringing funds for other children in need. For the last three years, Kohl and his father Randy, along with Team Courage have raised funds in the Colorado Courage Classic. Currently, Kohl's cancer is in remission and prayerfully will never come back. He has fought the fight for himself and others. However, this fight cannot be won by will power alone; it takes donations and a team to rally around each one that has a need.

Who Should Help?

So who makes a team of people to help children walk through the journey of illness and disease? Walt Disney was not the only person who rallied around my mother when she was ill. She had her parents who were dedicated and determined to see every possible chance for her to live to be explored. She had a dedicated medical team to research and experiment with possible treatments to make help make her well. She had family and friends who helped raise funds and support her with prayers and love. She lived because her she wanted life and so did those around her.

We too can make a difference in a person's life. We can help provide funding for research or bring encouragement to a family in need. We can walk a "Walk for Life" or contribute to an activity. We could go into research or develop the next cure. Great or small, each contribution helps. We should not have to rely on a government plan to make us well; we do not have the time for that. We can fight this fight from the level of humanity. It is the power of love and strong medicine that heals. Consider today, "who do you see around you that needs help?" There are many Justins and many Kohls who live in your community. There are also too few Walt Disneys left in this world. It could take you to make the difference today.

Kohl and Randy Benjamin

Kohl and Randy Benjamin -- fighting cancer and raising money by bike riding in the Courage Classic.
Kohl and Randy Benjamin -- fighting cancer and raising money by bike riding in the Courage Classic. | Source


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