My son just passed away from Medullablastoma at the age 7 and this is our story. He was presented into CCMC's ER for seizure activity that was not in his history. After a few tests they told his father and I that he had a terminal brain cancer. He went in for immediate surgery shortly after. He had 3 tumors in his brain. One brain tumor they said was the size of a plum; this one was putting direct pressure on his spinal column. His spine was "sugar coated" with tumor, and he had a tumor deposit at the bottom of his spine. He had the biggest tumor operated on (in the back of his head) and parts of it were removed but not all could be. They would have had to cut into the top of his spinal cord and it could kill him. He went into the PICU at children's hospital for several months. He had some severe side effects from his brain surgery such as vision loss, the ability to speak, eat by mouth, walk or have much motion in his extremities. He had many things implanted/mounted in or on him (too many to list). His time in the PICU was always touch and go. Eventually we made it to the 8th floor which is Hemocology/Oncology. We got a little better, and got discharged home. We had a few more trips back into CCMC for some illnesses or minor problems but we were out in a week or less. We saw some new life and then a sudden decline and he passed away in the home with his closest family around.
I would like to think that we are a middle class family. I still didn't have a life insurance policy, big savings account or 401K to draw from. We were faced with financial burdens before all of this happened. I was laid off and had no income at the time. Health insurance did cover most expenses. His father and I were separated for years at this point. We shared our time with him so, upon discharge, we needed two of everything, which was not covered. I didn't have the funds to cover these things that were happening then so I thought how could I pay for a proper burial and end of life costs? Then I thought, if I am having these thoughts...don't other parents? That is how and why this foundation got its start.
I had friends and family helping me out through all these struggles. I had been in contact with some of the cancer "foundations and organizations". I had the social workers from the hospital doing their best to try to find resources. I was very frustrated, upset, exhausted, and sad. I felt like there was no one who could help me in "this" situation. I wanted to create an organization so I could provide families with the here and now help. I want to provide families with "the one stop shop" of answers for all of their needs. A complete list of resources including help with meds, financial help, transportation help, end of life grieving and burial needs. I always felt that there was NO help out there for me and my situation with my son but, I now see that there IS help out there but the families, social workers and nurses may not know it. I want to be able to point them in the right direction AND be there to pick up the slack financially so parents and guardians can focus on the task at hand.
Helping Terminally Ill Kids
Bristol, CT 06010
Nov. 14, 2003 - May 23, 2011
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Light of Hope was formed when a very special child was diagnosed with cancer.
Wayne passed away from Medullablastoma at the age of 7.
volunteer. Join the board of directors, send us a monetary donation or consider giving us a raffle gift or door prize for one of our next events. The IRS "approval" came in on the date of my son's death . . . this is fate.
Thank you for all the love, support and prayers. I can't do this without all of your support.
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