My family received devastating news on September 11th, 2017. My cousin, Chad Santamaria, was diagnosed with a rare and deadly high-grade brain tumor, DIPG/ Diffuse Intrinsic Pontine Glioma. Brain tumors are bad but this was the worst - it’s inoperable due to it’s complexity and location in the pons (lowest part of the brainstem), and it’s known to progress aggressively once initial symptoms are present.
After multiple professional medical opinions, this diagnosis was re-confirmed on November 2nd following another MRI. Initially we all thought Chad just needed a pair of eyeglasses, since he was experiencing double-vision, but we soon learned this was sadly a first symptom of DIPG.
With bare-minimum funding currently directed towards finding successful treatment of this disease that affects approximately 300 children a year in the US, there is currently no cure and the prognosis is dim, with most children succumbing to DIPG within 9 months of initial diagnosis, and less than 2% of children fighting to live beyond two years of diagnosis, with and/or without various treatment. A child diagnosed with DIPG today faces the same prognosis as a child diagnosed 40 years ago.
There are only select-few clinical trials that are slowly becoming available in the U.S., specifically designed to target DIPG and hopefully find a cure. Such trials have very limited space and they are not without risk though, with some being convection-enhanced delivery, which is a surgery/injection technique designed to deliver drugs directly into the brain where the tumor is. This will hopefully help tackle the blood-brain-barrier issue with other conventional methods used in the past that were unsuccessful.
Despite this stark reality, my family has hope that Chad will have a fighting chance to maintain this disease long-term until there is a cure, or better yet, be the one to endure cutting-edge clinical trials to successfully find a cure, so that he can also help many more children in our generation diagnosed with this devastating disease.
A little bit about my amazing cousin:
Chad just turned 16 years old this past May (he shares the same birthday as our late grandfather Dionisio). At the age of six, he discovered his passion for drawing and his creative side, making animated flip drawings then progressing to creating professional-style stop-motion animation, an animation technique that physically manipulates an object so that it appears to move on its own, with legos, his computer, and patience. He is on his way to creating some awesome movies with Disney or Pixar someday for the public to enjoy!
As of November 13th, he is taking a break from school (a straight A student!) to seek treatment, first one being radiation (a prerequisite in order to be placed in any new clinical trial), and we are in the grueling process of obtaining various medical professional opinions and insights, so we can see what’s best for Chad as far as more promising clinical trial treatments (delivery methods and drug combinations used vary). He is the youngest of four siblings (one brother and two sisters), with his loving parents, Ray and Celia, working hard to support their family and juggle this difficult endeavor ahead. Chad also just became an uncle this past month, and his other sister is due this December! He lives with his family in Vallejo, CA, where we often have fun family gatherings at their home.
Chad is a kind soul with big goals, and he has so much to offer the world in his lifetime. He always has a thought in mind for others, and has remained positive during this time with the support of family and friends. He is loved fiercely by those who know him and we have hope that he will beat this, make history with discovery for a cure, and provide hope for other kids (and their families) who will be in his shoes one day as well.
I’ve organized this fundraiser in order to support the following goals in mind, so we can all come together and help Chad tackle this tumor. Any amount big or small will help, and Chad and my family will be so grateful for the support during this difficult time.
MEDICAL EXPENSES: Specifically advanced and/or new clinical trials; various treatment and/or drugs that are likely not fully covered by health insurance. Such clinical trials are to prolong quality-of-life and find a cure, which has yet to be done for any child diagnosed with DIPG.
FAMILY TIME: To allow Chad, and his family and friends, to have the opportunity to make special memories together while they can. To allow both of his parents to take prolonged time off from work to be there for Chad.
RESEARCH: To make history and provide real hope in the near future to conquer this devastating disease. To find a cure so that it can be readily accessible and affordable to children and their families to survive DIPG and live a long and healthy life. Somewhat-promising drugs today were not even offered in the last few years, and this was made possible by donors and the angels who fought this disease before Chad.
THANK YOU so much to everyone in advance for your love, kindness, and support.
Please feel free to share if you are so inclined, or if you or someone you know has been affected by this devastating disease DIPG. Together we can create not only awareness, but results for Chad and other children to move past this and thrive.
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- Lourdes Coles
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