Taken from
http://declansjourney.com/ (I work with Declan's Grandmother)...
If you are visiting Declan's Journey for the 1st time today... let us first thank you and welcome you to the story of our little boy, Declan. This morning our family is visiting the Today Show to raise awareness and understanding of Pediatric Cancer. Whether you’re here for the first time or one of the 5800+ that have supported Declan’s fight against cancer we want to tell you about what is driving us.
Declan is the third of our 4 boys (a twin and just 1 minute older than his brother!).
On March 9th, 2010 our lives changed forever, it is the day we learned Declan (then 6 months old) had a brain tumor. In the days to follow we learned Declan not only had a pinneal brain tumor but two additional tumors (one base of brain and top of spine and one in his right kidney)…all malignant and a rare form of childhood cancer called Atypical Teratoid Rhabdoid Tumors or AT/RT. (BTW, most childhood cancers are considered rare.)
The Declan’s Journey web site was developed by our family initially as a means to get information to our friends and loved ones about Declan’s illness. This way we could focus our attention on caring for Declan and our other boys, Will, Brady and Cole. But somewhere along the way (I think it was when we started posting pictures of Declan’s infectious smile!) something amazing happened…people we didn’t know were following Declan’s story. They were praying with us…cheering the happy moments (like meeting the Sesame Street characters)…
…and crying along with us in the devastatingly sad moments. The grace with which our darling little boy handled his treatment was awe inspiring and life changing for us…and for so many others who shared his journey.
Sadly, oh my God so sadly, Declan lost his battle with cancer on August 18th of this year just 8 days shy of what would be his and his twin brother Cole’s 1st birthday. It would have been easy to let the Journey die on August 18th with Declan…curl up in a ball and mourn the loss of our sweet baby… but we knew we couldn’t! We don’t want any other family to endure what we have in these last 6 months. So we have chosen to continue Declan’s Journey and become a voice for Pediatric Cancer, by raising awareness for how woefully underfunded Pediatric Cancer is, as well as misunderstood. We were shocked to learn babies got cancer (kind of a bad time to figure that one out, eh?) but I truly didn’t think it was possible. Of course we knew about St. Jude and that “kids” got cancer… but babies! We’ve made monthly contributions to St. Jude for years but naively we thought the necessary funding for research was piling up and it was just be a matter of time before there would be a cure. Well, we were wrong on both counts! The funding is terrible and until we do something about that, a cure will not happen.
Did you know the ribbon which represents Pediatric Cancer is gold? Most of us know what the pink ribbon represents because people rallied for Mothers, Grandmothers, Aunts, Daughters and Sisters. But what about our children? What about the children and parents of tomorrow?
Throughout this journey with Declan we have learned some staggering statistics and they are completely unacceptable on so many levels but mainly because it means many other families will have to endure what we have just gone through in burying a son or daughter…a brother or sister…a grandchild…a nephew/niece…a friend. These head scratching statistics are available via the web and we’ve highlighted some of these in previous blog posts. But we would like you to consider the two thoughts below when you think of Pediatric Cancer funding and the associated research…
~ There are 2500 pediatric deaths each year because of cancer. It’s estimated that approximately $1 billion in research is needed to develop a new drug/cure for each of the 12 most common pediatric subtypes. Childhood cancer as a whole receives about $130 million/yr in funding. At that rate, it will take about 100 years to develop these drugs and 250,000 children will die.
~ Pediatric Cancer is the #2 overall killer of children in the U.S. The #1 killer is vehicle related accidents. Consider how much we as a society spend on vehicle related research (i.e. seatbelts, crash tests, car seats, booster seats, etc.). Every time we buy a vehicle we invest in this research. There is no comparable revenue stream in place for Pediatric Cancer.
It would only take $35 per American to solve for the first thought and save 250,000 children/families… this is why we must come together, raise awareness, develop a consistent funding stream and ultimately cure Pediatric Cancer!
We are dedicating ourselves to this journey…to one day have the gold ribbon as recognizable as the pink… to save tomorrow’s children… and to save tomorrow’s parents the heartache we are suffering. WE CAN do this for our children, our grandchildren, our nieces, nephews and future generations!
We invite you to join us as we continue Declan’s Journey and change the face of awareness. We are currently setting up a 501(c)3 Non-Profit organization and will provide details regarding our mission/goals in the weeks to come. For now, please join us to help spread the word about Pediatric Cancer, tell someone about Declan or another child you know that is in the fight of their life against cancer.
