Paul loved going to school every day and seeing his wonderful teachers and therapists in the FLITe program. They worked with him every day to help him face life’s challenges. Paul LOVED music. Music was a reward for Paul and it always motivated him to try his best. Paul’s favorite children’s authors were Dr. Seuss and Eric Carle, their rhyming words were like music to his ears. Paul loved when you read to him with joy and enthusiasm. If you did not exhibit joy when you read to him he would quickly express his disapproval by taking the book away from you. Paul was never able to speak, but you always heard him loudly and clearly. Ask anyone who knew him and they will tell you that his facial expressions and body language were louder than any words he could have ever spoken.
We did not realize that Paul would face challenges bigger than Fragile X until he got up one morning and had difficulty walking. His eyes suddenly crossed. Paul was diagnosed with Diffuse Intrinsic Pontine Glioma (DIPG) at the age of 10 on May 21, 2011. DIPG is an aggressive brain tumor with a less than 10% survival rate two years after diagnosis.
Paul participated in two clinical trials at Texas Children’s Hospital under the direction of Dr. Jack Su, Dr. Patricia Baxter, and a host of other doctors and nurses at Texas Children’s Hospital. The doctors, nurses, and staff took great care of him during his nearly two year battle with DIPG. Paul’s radio and his books were with him at all times as he trekked the halls of the Clinical Care Center and West Tower at Texas Children’s Hospital. Paul died on March 23, 2013 at the age of 12. His tumor was donated to Texas Children’s Hospital for research. It is an example of Paul’s ability to express his thanks without words.
Paul’s younger sister, Maya, expressed Paul’s personality by spelling out his name with these words, P – Playful, A – Awesome, U – Unbelievable, L – Laughter. We pray that Paul’s legacy lives on through the research that is done to find a cure not only for DIPG, but for all brain cancers.