Darren was diagnosed with NF1 as a toddler. He lives in Guam, and his Aunt, who lives in Los Angeles began participating in the LA NF Walk each year in his honor. When Darren was nominated to a ‘Make a Wish,’ he knew exactly what he wanted: to come to Los Angeles and participate in the Shine a Light NF Walk with his Aunt and the rest of his family! We connected with his mom and Aunt to fill us in:
Tell us about when Darren was first diagnosed. How were you feeling?
Rhia (Darren’s mom): Darren was diagnosed when he was 2 years 7 months old. We noticed that the swelling around his left eye never went down. We brought him to a Guam ophthalmologist. He ordered an MRI and a consultation with an Orbit Specialist in the Philippines.
Dr. Dina Memoracion-Peralta of St. Luke’s Hospital in the Philippines noticed Darren’s café au lait spots and suspected neurofibromatosis right away. She performed an orbitotomy on Darren’s left eye. NF1 was confirmed after the biopsy of the mass taken.
We were devastated with the diagnosis. I am a person who plans for everything and the NF diagnosis presented so much unpredictability. It hurt so bad that we cannot do anything to take it away from our son. We were so scared of the life he has to live. But, we knew that we had to accept, adjust, and strive to give him a happy life despite of his condition.
Madeleine (Darren’s Aunt): Darren was diagnosed in March 2013. My whole family went back to the Philippines around that time to attend my college graduation, but little did we know, it was also the time Darren, the sole grandchild in our family, was diagnosed with NF.
Our whole family was devastated; we tried to understand what NF was and we felt scared for his future. But as his family, we know that we have to be strong to support him. We used each other as our source of strength and decided that whatever happens, we’ll be there to support him and to build his confidence to have a positive outlook in life.
How does living NF with impact Darren’s life?
Rhia: Darren needed speech therapy from 3 to 6 years old. He also has bad eyesight that requires him to wear eyeglasses. He has mild delay in motor skills and hypotonia causing him to be clumsy.
Strangers and acquaintances get curious with the visible plexiform NF on his left eye and left chest. When he was younger, he answered questions with “It’s just my NF, I was born with it.” But now, at 9 years old, I noticed that he only answers questions from acquaintances and brushes off the questions of strangers, especially kids. He’s also starting to get conscious of his plexiform fibromas.
As a mom, I take every chance to inform and raise awareness about neurofibromatosis. I try to answer questions from curious strangers.
There are days that my husband and I still get hit by immense fear of NF but we try to lift things that we cannot control up to God. We try to give him a normal life, one day at a time, to love and support him in whatever goal he sets his mind to.
How do you stay motivated? How do you face challenges?
Rhia: Honestly, we get our motivation from Darren himself. He has so much energy and is always up to challenges. He is a member of a swim club and recently started kickboxing. Due to his slight motor delay, he doesn’t improve as fast as most kids, but this doesn’t discourage him from training.
There was one time that his dad and I saw him struggling in kickboxing. After the training, we told him that he doesn’t need to stay if he doesn’t want to. He answered us with “I’m okay. I like it. I’m not a quitter.”
During harder situations, we overcome challenges by being together and talking things over. My husband and I try our best to be honest with Darren especially about his NF. Lots of hugs and kisses make difficult times easier and conversations a bit lighter.
How did the Make-a-Wish opportunity come about? Why did Darren choose the Shine a Light on NF Walk in LA?
Rhia: One afternoon in December 2018, Dr. Edna Santos, his pediatrician, informed me that she was going to refer Darren to the Make a Wish (MAW) Foundation. She is well informed about neurofibromatosis and very dedicated to her patients. After a few weeks, we received a call from MAW Foundation Guam informing us that Darren was eligible for a wish!
My sister Madeleine has been participating in the NF Walk in Los Angeles for the past several years. She would volunteer or walk with our parents for Darren. They would show us photos and videos of the events. Darren liked the Star Wars Storm Troopers and the colorful lights.
Darren has not been able to interact or play with any NF kid since the diagnosis. The NF Walk is a fun opportunity to meet and be friends with other NF heroes, and we are happy for him that he will be able to finally do this.
Madeleine: To be honest, I was shocked at how genuine his wish to come to LA was. I started joining the NF Walk in LA in 2016 and volunteered in 2018. Every year, I was sending pictures and videos to my sister to show to Darren. He was grateful that I was walking for him, but I didn’t know how great the impact was for him, how these walks made him want to meet NF Heroes like him. I’m so excited that we, as an NF community, will greet Darren here in LA. I hope that this will be a memorable experience for him.
What gives you hope?
Rhia: Aside from the support and prayers of our families and friends for Darren, it is the perseverance of the researchers, doctors and volunteers to find a cure for NF that makes us hopeful.
Is there anything else you’d like to add?
Rhia: Attending the NF Walk LA would not have been possible if not through the kindness of Dr. Santos, the MAW Foundation of Guam and CNMI and its donors. Darren has great friends in Guam but this is the first time that he’s able to meet kids who undergo similar trials and struggles as his. This means a lot to him, and to us, as a family. We deeply appreciate the enthusiasm of the NF walk organizers to meet Darren.
For more information about the Shine a Light NF Walk in Los Angeles, visit shinealightwalk.org/la.
