A few evenings ago, I stumbled upon a video on YouTube about a remarkable boy. This boy’s name was Sam Berns. He suffered from a very rare and somewhat interesting disease known as Progeria.
Progeria is a genetic disorder where symptoms of aging occur at a rapid pace, from a very early age. This results in young children looking older than their parents. There are only a few people in the world with this disease.
Unfortunately, these people die at a very early age. They also have to live with the symptoms of being an elderly person. Imagine losing your teeth, your hair and your bone density when you are only a child!
The movie called The Curious Case of Benjamin Button (one of my favourite movies of all time), which depicts a seventy-year-old man aging backwards, is inspired by Progeria.
Interestingly enough, some of my friends were well-acquainted with a young man in South Africa who suffered from Progeria. If you are familiar with the band Die Antwoord, you may have seen the music video for their track called “Enter the Ninja”. This specific music video features Leon Botha – a very talented local artist and DJ, who unfortunately passed away from Progeria in 2011.
Now, getting back to the YouTube video of Sam Berns.
Sam was a truly remarkable boy. Despite knowing that he was not going to live a full and healthy life, and despite having terrible physical symptoms, he was still able to make the most out of his life.
The tear-jerking video, titled “My philosophy for a happy life”, talks about what Sam perceives to be a recipe for happiness.
Sam’s philosophy for a happy life:
- Be okay with what you ultimately can’t do, because there is so much you can do.
- Surround yourself with people you want to be around.
- Keep moving forward.
- Never miss a party if you can help it.
You may also be interested in the documentary called Life According to Sam, which sheds light on Sam’s experiences, and reveals how his amazing family fought so hard to save him. Sam’s incredible family also made huge contributions to Progeria research.
Sam is one of the most inspiring children I have ever seen. He is one of many children suffering from a rare disease that affects physical appearance. Progeria is but one of these diseases. Unfortunately, Progeria is also a disease with a low life expectancy.
I went on to watch videos about other extraordinary children who are inspiring and influential, despite horrendous odds. One child was born without a face. Another child was burnt in a fire – almost to death.
What occurred to me is that these children, who may look different on the outside, are just ordinary children on the inside. Children who look different, or even scary to some, are just as human as you and I. In fact, in many cases, I have seen more humanity in these beautiful children than I have seen in many fully functional children and adults.
When I heard these children speak and play, I was amazed at how special they are. They are beautiful people with big hearts.
I realised that when children look disfigured on the outside, they are not the ones who are uncomfortable. They are not the ones who make the situation awkward. It is everyone else that is uncomfortable. These kids are essentially just children.
It is our discomfort that we need to deal with. When someone looks different on the outside, no matter what feelings of uneasiness they may conjure up in us, we should all try to see the person behind the face or body.
It takes an extraordinary type of person to work with children who are special and different. If you study child care and pursue this as a career path, you may be fortunate enough to meet some special children just like Sam. When and if this happens, you should consider yourself extremely honoured. We can learn so much from these children.