News

Supporting kids and families from hospital to home.

Starlight Child of the Month

Meet JP
Diagnosis: Niemann-Pick Disease, Type C
Life is good! You have a healthy little girl, followed by a bouncing baby boy! Everyone is thriving and happy. Over time, you begin to notice that your strong little boy is missing pitches on the baseball field that he would otherwise knock out of the park. Gradually, you observe that he's beginning to speak less and less. His grades start slipping. His walk begins to turn into more of a shuffle than a stride.

Like any good parent, you bring him to every doctor you can find seeking answers. None can be found. You bring him to renowned hospitals, clinics and institutions and after test upon test, more than a year after your first doctor's visit, a diagnosis is reached. The news is devastating. Your vivacious little boy has an incurable brain disease reminiscent of Alzheimer's, which will rob him of his faculties and eventually, his life. This is JP's story.

JP, who turns 12 in February, is your typical pre-teen boy. He is friendly, outgoing and happy - a true lover of people and life. He goes to school, adores sports, enjoys hanging out with friends, is taking an interest in girls and likes spending time with his family. Despite his terrible diagnosis, JP is positive and cheerful. Much of his attitude can be attributed to his personality; however, much can also be credited to his unbelievable support network that extends beyond family, friends and faith.

In fact, his network stretches all the way to the University at Albany, SUNY, where after learning of his story and love of sports, JP was embraced by the athletic community. Will Brown, head coach for the University's basketball program, even officially drafted him to the team. He practices with the players, sits beside them on the bench during games and even gets to shoot t-shirts into the massive crowd using the t-shirt gun! But Will Brown was not the only coach at University at Albany to take notice.

Throughout history, lacrosse has been called the "medicine game" and was played by Native Americans as a way to heal people. Armed with this knowledge, SUNY lacrosse team head coach Scott Marr welcomed JP onto the team where he has been an official member of the roster for two years.

It is because of exciting activities such as these, people such as the SUNY staff and players and charitable organizations dedicated to helping sick children and those finding cures, that JP can remain upbeat despite bi-weekly spinal taps, continuous physical therapy and experimental medications.

Time is a precious commodity for JP and his family. Every moment is spent enjoying the present and trying not to worry about the future. Gradually, he will lose his mobility, his speech, his hearing and his memories. That is why it's important for him and his family to create memories now. That is also why programs like Starlight® Escapes are crucial to families like JP's.

For now, JP's medications seem to be delaying the onset of new symptoms, and so, right now, in this moment, for JP, his supporters and his family - including his Starlight family - life is good.


JP with basketball player Richard Peters