His name is Rob Carter and he turned 29 years old on the 4th of June 2001. "What is so extraordinary about that?", I hear you ask. Well, considering that doctors told his parents almost 20 years ago that he would probably not live past his teens I think it is pretty amazing.

Rob is my brother-in-law and when he was 10 years old he was diagnosed with Duchenne's Muscular Dystrophy, a progressive and ultimately fatal disease that attacks the muscle tissue of the entire body. This condition is genetic, which means that one is born with it.

There is no cure for this disease, which affects about one in 3,500 male children. The average life expectancy of an affected child is no more than around 20 years and though there is usually not so much pain involved the emotional toll on the child, their family and friends is enormous.

Rob was teased a lot during his preteens because of his limited athletic abilities. He was called clumsy and lazy because he was slow, fell down often and ran funny. He used to be accused of being 'queer' because he walked on his toes and his spine had an exaggerated curve. Other children used to point their fingers and laugh at him because of it.

Little did his tormentors know that it wasn't his fault at all. His faith was sealed at the time of his conception by a single defective X chromosome. Rob was actually relieved when he finally found out why he was different and realized that the falling down, the walking and running funny and the strange posture were all normal symptoms of the early stages of Muscular Dystrophy.

He tried to walk on his own for as long as he could manage though he fell down more and more often. At age 14 he got his first wheelchair, a manual one, but he didn't much care for it. His friends got more use out of it actually than Rob did. Eventually, after a bad fall, which resulted in a concussion, Rob had to realize that the wheelchair is a necessity and at 15 he got fitted for an electric one.

Being confined to a chair didn’t slow Rob down a bit. Apart from the occasional frustrations with not being able to do certain things any more he was a happy go lucky boy with lots of friends. He was very popular in high school and when he rolled up to receive his diploma at his graduation the whole assembly broke out in cheers and a thunderous applause.

He tried to stay active after school, though there was only so much he could do. For a while he was working for his uncle selling used cars but as time went by and his body got weaker he had to give it up. After that he was often seen cruising around town in his electric wheelchair, up and down the Boulevard, visiting friends and family but as the years passed he felt less and less confident to venture out alone.

Around ’95 he got his first computer and shortly after discovered the Internet. A whole new world opened up for him. He taught himself how to create graphics and write html and through IRC (Internet Relay Chat) he met people from all over the world.

For his 25th birthday it was arranged that the friends he made through the Internet would come to Virginia and surprise him. By that time Rob’s mobility was restricted to his head, arms and hands, but he was still able to sit in his chair all day and feed himself as well. The surprise party was a huge success and Rob got all teary eyed when he saw all his online friends (some of them from as far as California) in his living room, close enough to touch.

I met him a year later and it didn’t take me long to realize what his friends and family knew all along, that he is one of the most selfless and giving people that exist in the world. Rob has never let his disease "ruin" his life. He has never wallowed in self-pity or gotten angry at his faith. He accepted it and focused on what he could do, instead of what he couldn’t.

When you're with Rob after a while you just forget that he's sitting in a wheelchair. You forget that he's unable to simply scratch an itch on his nose. You forget that he can not get comfortable by himself or visit the bathroom without his mother’s help. When you're with him you just see this young man with a healthy appreciation for a pretty girl, a kind and generous heart, always ready to let loose with one of his famous one-liners and make you laugh.

The inevitable has happened a few months ago. Rob developed breathing problems, as his Diaphragm got weaker. His lungs were unable to take in enough oxygen and the carbon monoxide has started to build up in his blood. As his breathing got weaker so did the rest of his body. He was unable to sit in his chair for a prolonged period and had to lie down to rest more often.

These days he lies in bed all the time, unable to tolerate even his overstuffed recliner anymore. He sleeps a lot, eats little and has hardly any strength left to receive visitors. His body clock is slowly winding down, one by one his vital organs will cease to function and soon he will leave us forever. He is ready. He is not afraid. He is more worried about us, but we tell him that we will be ok.

Soon he will not even know we are there because the amount of carbon monoxide in his blood makes him hallucinate a lot. There are days when he just lies in bed, talks to people who are not there and has no idea what is really going on around him. He is not in pain, but is tired and weak and confused most of the time.

All we can do now is be with him, love him and make him as comfortable as possible. We comfort each other and try to be strong for him, but he knows we suffer because it hurts like crazy to loose him. We each said our goodbyes while he was still coherent and lucid enough to understand. He knows we love him very much and that we will never forget him.

Rob touched many lives and inspired many people with the brave and dignified manner he handled his fate. He has always been a great listener and his friends often came to him for advice or just to vent. He had this capacity to make you feel good about yourself and no matter how big your problems seemed at first, after talking to him you realized that it is not so bad after all.

I feel very privileged to have had the chance to know him and be a part of his life. I couldn't love him more if he was my biological brother and I am grateful for the time we got to spend together. My life is so much richer now that I got to meet someone like him. Rob has a noble soul and has always been larger than life itself. He will be in our thoughts long after he has left us for that better place.

Goodbye, my hero.