...and so it continues

That's probably a strange title for the first post...but this blog will be an extension of a website that has been in existence (in one name or another) for about 3 years.

http://www.icouldbeyourchild.org/ was born from http://www.jjsmiracle.com/. JJ's Miracle is where our family kept current family members, friends and strangers our son's condition as he battled diffuse intrinsic pontine glioma (dipg) a tumor in the brainstem usually found in children.

As his journey progressed we found that we were not alone with a rare tumor in the world of childhood cancer and "Other Kids" were added to JJ's website. Time passed on and children passed away - they were "Lifted Up" from this disease - usually less than two years from having been diagnosed.

In an effort to keep these families connected I Could Be Your Child was formed. It has become an information portal for parents who are searching. No one site will ever have every bit of information - ICBYC just points the way.

We are trying to raise awareness about the existence of the disease as there is precious little known about the disease itself. At this point, doctors can offer no proven cure to save the lives of these (mostly) 5 - 10 year olds. At this point, doctors can offer no explantion for the cause of dipg.

We are not alone in our efforts. More than 50 organizations are listed on the Foundations page - these are just those started by family members and do not include the regional & national with which you may be more familiar (many of these are also listed there).

What will happen on this blog is a play-by-play of what changes have been made to http://www.icouldbeyourchild.org/.

Today's change involves the Lifting Up of Kyle Roger.

Please stop by ICBYC and have a look around. If you have the time, spend it getting to know some of the kids - I can pretty well guarantee that they will touch your heart.

di
JJ's mom