It’s so rare

I just came back from a meeting of rare disease patients. These are the people who have few treatment options, and who have few medicines and therapies being pursued on their behalf. It’s an incredibly complicated issue, and sometimes when there is a glimmer of hope that something might work, there’s an insurmountable safety issue or the stability of a compound can’t be achieved. In other words, the drug might have some serious side effects, or it can’t be made consistently.

On the last night of the event, there was an art show of paintings by artists who had captured children living with these diseases. This group of artists exists to bring to the world’s attention the suffering and hope of the estimated 350 million people worldwide who have them. Of the 7,000 known diseases, only about 150 have treatments.

One painting caught my attention so firmly. Colorful, of a boy, standing and laughing. It invited me in. And made me feel the wonder of life from the eyes of someone young and seemingly living his life with a degree of joy captured in hues and texture that must have taken weeks to create.

After walking around in the crowded room, I struck up a conversation with a man looking at another painting, and he observed to me its subtle mystery of hope and whimsy. And we talked about the event, and the challenges of living with these rare diseases, our families, and life in general.

At one point, I asked him if he had seen a picture of a laughing boy, and he said that he had. So I shared my thoughts on this work and talked more about how the painting conveyed so much zest and openness. After a few minutes of talking about this picture, the man said, “Thank you.” I said ‘You’re welcome.” He said, “No, you don’t understand, I am the artist, and the boy is over there.”

But the boy was not walking. And he was having a lot of trouble sitting up. But he was laughing. The artist explained that when he painted the picture about six months ago, the boy could stand, but his disease was slowly killing off his white brain cells, and he was gradually slipping away. At age 6, he would not live beyond 10. There is no cure.

There are only 200 known people in the world with this condition. I had the honor of talking with the man who painted life, and I was also honored to see that the boy was surrounded by a loving family who was playing with him, while he laughed, and clapped his hands, and looked with the deepest, most expressive eyes at the world around him. This family loved him unconditionally. As I listened and watched, there wasn’t regret and sadness. There was life and a real presence that the moment was now. Not tomorrow.

I have been reflecting on the age of the universe. It’s 14 billion years old. Galaxies and solar systems formed, stars came to life, planets found their orbits, and life emerged on at least one of these places, and now this moment with the artist and the boy and his family came and went. It was 14 billion years in the making. And I was there.

What an incredibly blessed day I had. In a crowd of hundreds of people, at the right place and time, I encountered creativity and love coming together.

I have been praying that God would make these moments happen more for me. I want to know that His love is real and that there is a hope that is greater and bigger than anything I know. I want to live life in renewed ways and be open to the mystery of a creator, a redeemer and a sustainer who is as concerned with the forming of a planet as he is with a single life in a single moment. It’s a simple prayer. Give me your eyes and ears.