Designate a month to be named as national DIPG Awareness month
DIPG is a fatal pediatric brain tumor that is still considered RARE. It is no longer RARE, and needs more public awareness so that it can be stopped!
My 7 yr old granddaughter Maylea Estridge, was diagnosed with DIPG on March 25, 2014. I have been a faithful donor to St. Jude's and other childhood cancer and disease charities for a lot of years. I was familiar with many of those cancer's names, until this one. I had heard of brain cancer and brain tumors, but I had never heard of this one. The one now invading my precious babies brain stem, DIPG. This is the Monster, the horrible among horrible of all the brain tumors. Why? Because the diagnosis of DIPG is an immediate death sentence to the child. This tumor is inoperable, incurable, and takes the child in the most horrific way, a little a time, all the while the child being mentally aware, but in most cases so young not knowing or understanding what is happening to them or why. 98% of these children do not live past 12 months after diagnosis and it takes most of them before that. I would ask you to search it online and read about it so that you can get the full impact of it's devastation. DIPG receives the very least of money funded for research. A mere 1% of the already pathetically low 4% that is given to fund all childhood cancer research! This has to change! No new treatment options or progress for DIPG made in over 30 years! It is still considered to be RARE, this too HAS to change! Since March, I have witnessed countless numbers of other children receive this diagnosis, and many others (including several diagnosed since Maylea) lose their battles. It makes me so very angry that something that is taking our children at rates such as this can still be called RARE! So many other cancer's have been put into the spotlight and awareness brought to them, some of them that before were in most cases death sentences are now being beaten because of such awareness and funding for research. And what a wonderful thing that is, but the truth is, the majority of those are all cancer's that strike primarily adults. Do our children not deserve those same chances? PLEASE, something has to be done to get more information out, DIPG has to have more funding, we have to find a cure! This is why it is so important that there be a national DIPG Awareness month. I, along with all of the other grandparents, parents, families, and the children themselves who are fighting this monster, and for those who have earned their wings and their families who will forever be changed, we beg you! Help our precious babies voices soon be heard! Thank you.
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