From time to time, when I have a reason and a free moment, I write a short story and share it hoping it will be worth your time. When that happens I try to write something meaningful (at least I hope so) and something more than just “I’m here… I’m alive”.
But today’s story is different… because it deals with nothing but “being alive”. It’s very personal and it breaks my heart.
A few days ago:
“Hi Daddy, it’s me Lea. We have just returned with mommy from a doctor.
I had some tests and it turns out that I’ve got an unusual disease that happens very rarely.
Unfortunately, there is no cure for it. And I am very sorry, because if nothing is done I will die early.
You couldn’t have noticed it earlier. I was born healthy and there have been no symptoms of the disease until now.
And there is one more thing… please don’t be upset.
My only brother, unfortunately, has the same disease”.
For a long time I could not catch my breath. It’s a story which is only a thin wall away from me. Behind the wall on the left side sleep my two children – Lea and Lukas.
I closed my eyes and imagined what happens when a world suddenly collapses like a house of cards. What would happen if the doom just struck next door. What if my children were in the way.
… because behind the wall on the right side of our twin-house live Kristof and Tola with their two children – Lea and Adam – who just fell ill with a deadly disease called Sanfilippo. It will allow them to develop normally only until age of 4. In the following years it will take away all their acquired skills and finally at the age of 15 their life.
It has struck so close that I can not erase the thoughts that I could have easily been in the same situation with my kids right now. And I can feel a huge sadness it would have caused. I’m ashamed of admitting that I often forget about those who suffer daily, because I don’t see or hear about them every day, and I often forget about gratitude.
There is hope … but the clock is ticking fast.
Although children were born healthy, the first symptoms of the disease begin to appear at age 2.
If a cure is found on time, before it’s too late, they have a chance to recover. Recent studies show hope for the future. Several stages of clinical tests have already been completed.
I was thinking what I could do to help?
- ONE THING that came to my mind was to spread the word.
- SECOND THING that came to my mind was to dedicate to Lea and Adam few of the most lyrical ballads I wrote in the past.
The proceeds will go directly to the hands of Lea’s and Adam’s parents.
- THIRD THING… you can help by sharing Lea’s and Adam’s story by clicking on any button at the bottom of this post or by copying the link to this page http://martinsimon.info/blog/1-most-important-thing-i-have-never-written-about
Listen to this ballad I wrote 18 years ago
… titled “Just Between Us Two” not knowing how strangely familiar the title will sound with this story. Today this song has survived till adulthood and I hope that Lea and Adam will also be able to enjoy adult life in less than 18 years from now.
[Iga Polubiec – vocals, Darek Polubiec – percussion, recording]
PS: This is Lea and Adam. I talked to their dad and grandmother and I know that they are very grateful for any (even small) help. The whole family is temporarily abroad and their plans to return home depend 100% on where the therapy and the opportunity to participate in clinical trials will be available. At this moment, the greatest progress has been made in the United States, Australia, Spain and the Netherlands.