By Diego Olivares
Efrain Corona is having a hard time concentrating on work at East Los Angeles College, where he is the theatre scene shop manager.
Corona, who has been at ELAC for two years, got some devastating news about his 15-year-old niece Julie. Julie had been diagnosed with Neimann-Pick Disease Type C (NPC).
According to the National Niemann-Pick Disease Foundation Inc., people with NPC cannot metabolize cholesterol and other lipids properly within a cell. This causes excessive amounts of cholesterol to accumulate within the liver, spleen and in some cases the brain. The NNPDF have estamated 500 cases of NPC worldwide and is always fatal.
Corona, who started teaching at the Los Angeles Community College Theatre Academy, described Julie as a fun-loving free spirited girl, who is loved by her entire family. Julie is the daughter of Corona’s cousin. She has two younger brothers and has a huge interest in music, reading and dancing.
“As one of her uncle’s in a large family, I would look at her as a happy and lovely girl growing up,” Corona said.
Due to NPC being so rare, it took doctor’s a long time to diagnose the disease causing Julie’s body to slowly shut down.Julie was never given time to dream about a possible career goal, as this disease has affected her at such a young age. Hearing about Julie’s diagnosis earlier this year, Corona was heavily affected by this grim information.
“It was heartbreaking for me and our family. As I researched and learned more about it, it became harder to understand. It was a truly devastating and fatal disease and a big part of it is watching your family member just collapse. The way Julie is,” Corona said.
Corona said that her family is trying their best to get through this very hard time. “Julie’s mom is very strong. She has become not only a mother standing by her daughter, but also has become a full-time nurse. She administers all the medications via a tube through her nose. I can’t even imagine what her mom and dad are going through,” Corona said.
Corona visits Julie at her grandmother’s home. Corona said that it be best for her to be there, so she can be around her immediate family. Corona says the visits are always emotional for both him and Julie. “I believe she enjoys my company as I tell her stories, play music for her and show her pictures of my sons,” Corona says of the visits. “People always ask me how she is doing and I really can’t answer that question. Julie is very ill. Although, she does do better some days.”
Julie’s family has set up a donation site to help them with Julie’s increasing medical expenses. Efrain has also set up a donation bin for his niece at the school, as well as a poster hanging up at his office and a board at the entrance of the P2 building. “As one student told me ‘Efrain, I only have 50 cents, but you know if I have 50 cents, another student will put another and so forth,’ I looked at him and said you know you are absolutely right,” Corona said.
Corona remembers one memory that will forever be etched in his mind. “As I wiped the tears from her eyes, she smiled at me and we winked at each other as a way to let each other know that we love each other,” Corona said.
Corona does have a message for all those who aid him in this rough time,“I want to thank all the students and faculty for all their contributions towards Julie’s fund. There are many terminally ill conditions out there affecting children today, NPC is one of those rare diseases that has hit home.” He hopes people can understand the hardship his niece has gone through. Having to battle such an illness, yet she was able to retain a very strong spirit.
As a teacher, Corona wants to teach his kids the best that he can. For them to do well in their future education and careers. As an uncle, he wants to do the best he can to help Julie, so she can live out the rest of her life in total comfort.
For more information on Neimann-Pick Disease Type C, watch Dr. Marc Patterson, a pediatric neurologist of the Rochester, Minnesota based Mayo Clinic, discuss it at further length in this video.