Hello Dear People,
The injections had a good result in Marc; the summer was great. But after the summer came autumn and Marc started to get sick again.
On Friday, December 19th, 2008, our Marc died. It's sad to see your son fighting and knowing that he can't win the battle. Our local hospital was fantastic; this is now the place were he began his life and where it ended. He died under the light of the christmas tree I put up for him.
The doctors in Groningen are trying to learn what they can from him, I so deeply hope they will find something important about how to cure Menkes. They took his brain, liver and a rib. We gave them our permission because we knew that Marc had an important story to tell the doctors.
It's sad, but also a relief to know he will not suffer any longer. Our daughter keeps on telling us that Marc is the brightest star in the sky; we will hang on to that thought. His birthday was December 25th and we celebrated his life by looking up at the stars and knew he was there!
Lots of love,
Marc's mommy Ellen
Posted: December, 2008
Hello, My name is Marco but I usually go by Marc. I live in a small town in the north of Holland with my parents Folkert & Ellen and my big sister Isa Esmee. I was born on Christmas morning in 2006. I’m a real Christmas child because I simply love lights.
In May 2006 my parents got a little worried about me because I could not hold my head up and I wasn’t gaining any weight. My hair also looked funny so my parents gave me a haircut, but it came back the same way. That’s when the doctor appointments started.
It wasn’t until November that I got diagnosed with Menkes disease. It was difficult to diagnose because it is so rare that only a few doctors understand the disease. The doctors were surprised, because I only have a few of the usual Menkes symptoms. Now that I'm one year old the doctors say I should not smile anymore, and I should not follow people with my eyes.
However I’m a happy baby and I like to smile, I also like to look at people, especially my older sister. I’m starting to make sounds, and therapy has helped me to strengthen my muscles, which helps me to hold my head up. I’m slower than other kids my age but I'm doing the best I can.
I'm starting copper injection treatment and my Mom and Dad hope this will be a good thing for me. I'm the first baby in Holland to receive this treatment so this is a big deal for me and my doctors. My doctors are staying in touch with the doctors in America, who are very knowledgable of this disease.
We have good health insurance in Holland which helps my parents pay the bills, it even covers the experimental copper treatments. Our wonderful family and friends are also helping my parents to take care of me, even my grandmother and grandfather help out when mommy is at work.
I hope to make lots of new friends on the internet who share this disease and my happiness!
Posted: January, 2008