Updated: Jun 22, 2021
By Cheryl Maguire
When Cale Ferrin was only 16 hours old, he had his first surgery to relieve pressure on his brain. He was diagnosed with Hydrocephalus, a congenital condition. Ten days later he was also diagnosed with Fanconi anemia (FA), a condition that can cause bone marrow failure, physical abnormalities, organ defects, and an increased risk of certain cancers.
Ferrin now 13 years old says, “FA is pretty rare, and as far as I know, I am the only person in the state of Nebraska with the condition.”
Fanconi anemia is a rare genetic disease that occurs in 1 in 160,000 individuals worldwide. Due to his condition Ferrin had 27 surgeries before the age of 7. The surgeries fixed his abnormal systems.
“My insides were built differently, so they had to rearrange things to get them all working together. Once those were done, I haven’t needed any other surgeries,” says Ferrin.
Challenges People Living with Fanconi Anemia Encounter
Preparing for the Unknown
Britteny Ferrin, Cale’s mother, explains some of the challenges he faces having a chronic disorder.
“We don’t know when or if symptoms will happen. It’s the unknown that we need to prepare for. As circumstances change, we adapt. During this pandemic we need to keep him safe at home since he has a compromised immune system. We don’t know what his future holds so we try and make the most of it while he is relatively healthy and strong,” says Britteny Ferrin.
Cale’s mom explains that sometimes when he asks for help the adult does not believe him or doesn’t take him seriously. He is learning how to speak up, understand his limitations, and communicate his needs.
“Prevention and education are keys to success when it comes to FA, or any chronic illness for that matter. Identifying areas of concern, whether medically, behaviorally, neurologically—it’s all relative to what the circumstances are, and you learn to work through it,” says Britteny Ferrin.
Bullying and Inappropriate Questions
Cale’s mother says that one of the bullying scenes in the movie he recently acted in is an actual scenario from Cale’s personal experience.
“Name calling, screaming from other children, staring, pointing, bullying and social isolation—it has all happened. We have been asked inappropriate questions so often, that we are now at the point where we just walk away. There are also the respectful questions with sincere intent. When that happens, we take the time to explain our differences,” says Britteny Ferrin.
Physically Tired or Difficult Muscle Dexterity
Cale’s mother says that his muscles may tire easily or cause him to have body aches which results in him laying low, or if necessary, using his wheelchair.
“Another area that is challenging for him is with hand dexterity. Writing is hard for him. We have OT services that help with his writing and they also work with his school to come up with alternatives to writing assignments or assistive technology. Most of the time it is only his muscle dexterity and stamina that are issues. I am constantly amazed with how he has adapted to everything he is faced with,” says Britteny Ferrin.
Cale Ferrin’s Acting Career
When Ferrin was 7 years old he heard a commercial on the radio for acting scouts looking for new talent.
“I signed up and took Master-level acting classes, then we went to an international competition call iPOP. It was there that I signed with an agent,” says Ferrin.
His first acting role that he booked was for Nickelodeon.
“During the audition we basically had a dance party to Taylor Swift. Then they called and told us I booked a guest star role on an episode on Nicky, Ricky, Dicky & Dawn. I was 8 years old. Soon after that, I got the audition for the movie More Beautiful for Having Been Broken,” says Ferrin.
More Beautiful For Having Been Broken is Ferrin’s first feature role in a movie playing the part of Freddie, a boy with FA.
“It wasn’t hard to prepare for the role of Freddie, because I could relate to everything that he was going through. Freddie is a special needs character, and I am a special needs actor, so I connected to the role. There are a few scenes that were hard to go through, from my experience. They are tough to watch but they are real and the emotion in the scenes are real,” says Ferrin.
Ferrin explains what he loves about acting by saying, “It’s a way to meet new people and it’s a great learning experience. I love to see how the director bring the paper to life. It’s one thing to learn lines, but it’s completely different when it all comes together. It’s like magic. One last thing I love… the craft service truck is amazing (the on-set caterers that provide lots of snacks and treats daily)!”
If he could change one thing about acting it would be having to go to school on set.
“It’s fun to have your own teacher, but I like to hang-out with my co-stars 24/7. I guess we do need to be serious and focus and study while we work on set too,” says Ferrin.
Because of Ferrin’s Fanconi Anemia, when he is acting on set, he needs to make sure that he stays safe and that he keeps his energy levels up.
“I think it is also hard to think that there aren’t a lot of disabled actors in the industry right now, but I like that I can be a role model to other kids,” says Ferrin.
Ferrin thinks it is important to let people know that he is fun to be around, and that people should not feel nervous around him.
“I like to think I am making a difference to other kids, with special needs or not. Some people may be shy. Maybe if they see me overcoming my challenges and following my dreams, I hope that will help them follow their dreams, too. It’s neat to think that I may be helping others at the same time,” says Ferrin.
Ferrin’s Outlook on Life
Ferrin wants people to know that during times like this, with the Coronavirus, that it’s important to remember that not everyone can recover from illnesses the way healthy people can.
“We need to stay home and take the precautions necessary to stay safe. This social distancing and isolation is what people feel like every day when they have medical challenges, or when they aren’t accepted by others. It doesn’t feel so great,” says Ferrin.
Ferrin explains that being healthy is not something to take for granted. He finds it helpful to try and find the good in every day.
“I like to help people stay positive. I like to hug and make people smile. If I can share a smile with someone, then I know it will be a good day,” says Ferrin.
Ferrin would like people to know that it is important to advance research related to FA so eventually a cure can be found. Right now, there is no cure. It is a chronic condition that Ferrin lives with and manages as best that he can.
“Just like anything else, there are tough things we all go through in life, but I like to add a little sugar and make lemonade,” says Ferrin.
Ferrin says, “Don’t forget to follow me on my social media!”
YouTube: @CaleTV (I’m just starting out on YouTube- so more videos will be coming soon!)
Cheryl Maguire holds a Master of Counseling Psychology degree. She is married and is the mother of twins and a daughter. Her writing has been published in The New York Times, Parents Magazine, AARP, Healthline, Your Teen Magazine, and many other publications. You can find her at Twitter @CherylMaguire05.