One day, my parents told us that we would soon have another sibling whose name ends with “-den”. We were curious and thought that was funny. Well, it was true, but it wasn’t a new baby - it is our own business and it’s called
I am Jaden Lim and I am 14 years old. My brother is Branden and he is 11 years old. We are both very different in many ways, especially our characters. However, we have two things in common.
Firstly, both of us like to make art or create things.
Secondly, we both have a rare disease.
Branden has never walked before - he was diagnosed with spinal muscular atrophy (SMA) when he was one year old. He started painting when he was two years old as a form of therapy to prevent his hands from getting weaker. It is our favourite pastime as my mum would give us paints, brushes and paper, and let us do whatever we like. We used our fingers and brushes, and we got really messy.
Since then, we have painted and drawn with some uncles and aunties who are artists (i.e. art jamming), had art exhibitions with friends, and created products with our artwork.
I always wonder how Branden can be so happy and always tell us “best day ever” when he can’t walk and sits down all day. We fight and play like any other boys, but my mum always reminds me to be gentle. Since we can’t do sports together, we play online games together with my friends. We love to go to the park and the beach, and we miss going out now because both of us have our rare disease.
At end of 2020, I got to know that I have a tumour in my pituitary gland which causes me to have growth hormone deficiency. And that is why I am smaller than my peers by a lot. If the tumour grows bigger and is not removed, I might become blind. But if the tumour is removed, the risk is very high for me. That means I won’t be able to draw and paint any more. Am I sad to know about my diagnosis? Yes, initially, and afraid too. But there is nothing that we can do about it at the moment except to monitor the growth of the tumour. I really dislike undergoing an MRI and taking blood tests every six months.
However, I have learned that as we do not have any control over how things happen, we have to make the best of what we can do. I like to get busy with my hands making helmets and drawing when I am bored or when I have nothing to do. It makes me focus on creating something and being able to see the output. I feel happy when I have finished creating something.
As for Branden, he enjoys being “crazy” or “ follow your heart” in his creations. He wants to be a YouTuber or gamer, but more than that, he just wants to be like other kids - to walk and run and play. I hope that one day, his dream will come true. My parents told us his treatment is very expensive, but Branden needs it so that he won’t get weaker over time and has a higher chance of surviving to become an adult. That’s one of the main reason reason we have started up this business: to earn some money to help our parents pay for Branden’s treatment.
We hope that with our artwork, we can share the joy and happiness that we experience, even though we have our own challenges. We are only teenagers, but we can all do something while counting our blessings every day. My dad always tells us to “make our days count, not count our days”.
So let’s celebrate life every day.