{"id":3688,"date":"2015-11-13T21:50:22","date_gmt":"2015-11-14T05:50:22","guid":{"rendered":"https:\/\/jacksangelsfoundation.com\/?p=3688"},"modified":"2015-11-13T21:53:03","modified_gmt":"2015-11-14T05:53:03","slug":"a-personal-appeal","status":"publish","type":"post","link":"https:\/\/jacksangelsfoundation.com\/?p=3688","title":{"rendered":"A Personal Appeal"},"content":{"rendered":"

pdf version<\/a><\/p>\n

Janet Demeter, Santa Clarita CA\u00a0\u00a0\u00a0\u00a0\u00a0\u00a0\u00a0\u00a0\u00a0\u00a0\u00a0\u00a0\u00a0\u00a0\u00a0\u00a0\u00a0\u00a0\u00a0\u00a0\u00a0\u00a0\u00a0\u00a0\u00a0\u00a0\u00a0\u00a0\u00a0\u00a0\u00a0\u00a0\u00a0\u00a0\u00a0\u00a0\u00a0\u00a0\u00a0\u00a0\u00a0\u00a0\u00a0\u00a0\u00a0\u00a0\u00a0\u00a0\u00a0\u00a0\u00a0\u00a0\u00a0\u00a0\u00a0\u00a0\u00a0\u00a0\u00a0\u00a0\u00a0\u00a0\u00a0\u00a0\u00a0\u00a0\u00a0\u00a0\u00a0\u00a0\u00a0\u00a0\u00a0\u00a0\u00a0\u00a0\u00a0\u00a0\u00a0\u00a0\u00a0\u00a0\u00a0\u00a0 November 13, 2015<\/p>\n

\"cropped-tree-photo\"<\/a>My son\u2019s story is similar to many DIPG-diagnosed children; it is unique because he was precious, as all children are precious.\u00a0 It is my hope that it may help shed light on this experience that is DIPG, that more will be moved to help find solutions for these children more quickly, and collaboratively.\u00a0 Currently, the experience of parents to a DIPG child is to hear that there are no solutions because, \u201cthe numbers aren\u2019t great enough for research investors.\u201d<\/p>\n

I work for the day that no parent has to hear that, to our system, their child is just a number.<\/p>\n

\u201cJack-Jack\u201d, Jack, aka James-William Gregory Demeter<\/em><\/p>\n

Jack was born August 30th<\/sup>, 2008; my little Saturday night man.\u00a0 His sister Sophie-Marie was just 2 \u00bd at the time, so it was a wonderful time of handfuls!\u00a0 Just some 5 weeks after he was born, we lost everything we had in a wildfire, October 12, 2008\u2014the \u201cMarek\u201d fire, in Lakeview Terrace, Kagel Canyon, and Lopez Canyons in the San Fernando Valley.\u00a0 It was an ominous experience.\u00a0 Jack was diagnosed with DIPG October 28, 2011; he had just turned three.\u00a0 He was the love of my life.<\/em><\/p>\n

\u00a0<\/em>Jack knew his polygons, parallelograms, trapezoids, counted into the hundreds, and was working on his alphabet in phonetic sounds, and in 3 languages.\u00a0 He loved music (he had a tiny violin) and musical instruments.\u00a0 We got him into a preschool program after radiation treatment; they loved him there, and he was so excited to go to school!\u00a0 He loved everything about it, and would say, \u201cI\u2019m here!\u201d each time he arrived.\u00a0 When he got on the bus, he\u2019d say, \u201cyou\u2019re P, for Patti!\u00a0 You\u2019re R, for Rose, and you\u2019re M, for Michael!\u201d\u00a0 He would greet everyone in this way on the bus.<\/em><\/p>\n

\u00a0<\/em>Two weeks before he died, he was visited by \u201ctwo white ghosts\u201d, that he later said were angels because they had wings.\u00a0 They joked with him and made him laugh.\u00a0 They told him that he would have to go with them soon, because he had something important to do.\u00a0 I was beside myself.<\/em><\/p>\n

\u00a0<\/em>After finally struggling with basic body functions, he passed away Sunday, July 30th<\/sup> at 6:40am, and went with the angels.\u00a0 He showed himself to us in many ways in the days recent to his death.\u00a0 He still lets me know he is there with heart rocks of all sizes, and sometimes we play as daisies in a hill somewhere in the clouds of my mind.\u00a0 I don\u2019t know how to go through the rest of my life without him but to think that some of us are privileged to meet, for a short time, a special guardian angel in a person.\u00a0 I hold on to my gratitude for this, and remember when I can to take life one moment at time, knowing that each one is filled with God, and Jack\u2014now part of the fabric of the Universe again.<\/em><\/p>\n

Brain tumors are the leading cause of cancer-related death in children, and one of the least-funded areas of research.\u00a0 With a steady stream of 200-400 new cases each year, DIPG is responsible for the majority of brain tumor deaths in children.\u00a0 To think this could continue for over 3 decades with the same excuse for not prioritizing them is unconscionable.<\/p>\n

And so now I watch on as other parents plan early Christmas for their child who is gradually losing his faculties; pining through their bucket lists, they shudder in horror at the possibility of seeing a symptom of the dreaded \u201cprogression of the tumor\u201d, which means that death is approaching.\u00a0 Right now, there is no hope, no escape, no solution, except to appeal in whatever way possible to the humanity of those with the means to make a difference, to power the solution.\u00a0 Thank you for your attention, and I pray that it may help bring support for this cause, in whatever way possible.\u00a0 God bless you.<\/p>\n","protected":false},"excerpt":{"rendered":"

pdf version Janet Demeter, Santa Clarita CA\u00a0\u00a0\u00a0\u00a0\u00a0\u00a0\u00a0\u00a0\u00a0\u00a0\u00a0\u00a0\u00a0\u00a0\u00a0\u00a0\u00a0\u00a0\u00a0\u00a0\u00a0\u00a0\u00a0\u00a0\u00a0\u00a0\u00a0\u00a0\u00a0\u00a0\u00a0\u00a0\u00a0\u00a0\u00a0\u00a0\u00a0\u00a0\u00a0\u00a0\u00a0\u00a0\u00a0\u00a0\u00a0\u00a0\u00a0\u00a0\u00a0\u00a0\u00a0\u00a0\u00a0\u00a0\u00a0\u00a0\u00a0\u00a0\u00a0\u00a0\u00a0\u00a0\u00a0\u00a0\u00a0\u00a0\u00a0\u00a0\u00a0\u00a0\u00a0\u00a0\u00a0\u00a0\u00a0\u00a0\u00a0\u00a0\u00a0\u00a0\u00a0\u00a0\u00a0\u00a0 November 13, 2015 My son\u2019s story is similar to many DIPG-diagnosed children; it is unique because he was precious, as all children are precious.\u00a0 It is my hope that it may help shed light on this experience that is DIPG, that more will\u2026<\/p>\n

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