Smith-Magenis Syndrome has touched all the lives of the people who read SPECTRUM. But I wonder if we truly realize how much it touches the lives of our families, friends and the communities in which we live.

Marcus was born on June 18, 1994, in Colorado Springs, CO. We moved to New Smyrna Beach, FL in May 2000. He passed away on October 3, 2009, from complications from an illness.

We got Marcus' diagnosis of SMS when he was 2 1/2 years old and at that time we were told that he was the youngest child diagnosed with SMS. That of course has changed now and children are being diagnosed in-utero so that parents can prepare for their special gift.

Marcus had a huge impact on people's lives, not just on his family but on his community. He loved his school families and they loved him. That's not to say that school was easy because as he got older it was increasingly difficult with some things, but people always overlooked the difficult and focused on the positive things in his life. He was always asking  “What name?” and then would tell you his name “Marcus T.” He would always say “When I grow up” and then he would look to Mom or Dad to fill in the blanks... “He wants to do your job when he grows up.” He always wanted to do everything, he had no limitations set for himself. In high school now, he'd been able to choose his own lunch and sit where he wanted, and as a typical 15 year old boy, he chose to sit with the girls, many of whom he didn't know, but he was teenager enough to realize that was a cool thing. The girls often had to remind him to come back and eat his lunch as he would be ready to go off and socialize whenever the idea hit him. But the girls didn't care. He'd come back and give hugs to all after lunch was over.

imgSuperkidMTHe loved the people in the stores of our community. He loved to grocery shop with his dad and the folks in Walmart, and he'd be grown up enough to go into Blockbuster Video and pick out a movie, always with Dad in sight. I'm sure the people at our Home Depot wondered who arranged their shelves so well, as he would do that while Dad was looking for whatever part was needed.  He would always ask names and remember them. Something I still can't do!!

Marcus was one of the 30% or so children with an immune deficiency, so we were always fighting some illness- usually ears or sinus. He was no stranger to the doctors and actually loved them, often helping the lab techs with the blood drawing and the x-ray techs wanting to help push the buttons for this or that. He loved his doctors and they knew him well and took good care of him.

As Marcus grew older, he would sit on the front porch in the rocking chair and watch our neighbors go about their lives. He'd welcome them home with a "Hi, Jill" or a big wave as they drove by. They would always see him with his headphones on and music playing on his MP3. Country music was his favorite and he would be singing along to most of them and rocking away.

He also loved to dress up in costumes - Spiderman and the ROCK guy from Fantastic Four. He'd walk circles in the yard with his costumes on, shooting webs or being the tough guy. So our neighbors knew him well and always waved back with a smile.

Another favorite thing for Marcus was to talk on the phone. He knew the speed dial numbers on our phones and would call his big brother just to talk or to be cheered up, that's what brothers are for, after all. He'd call his grandmother and aunt as often as I'd let him. They live in different time zones, so I'm sure they didn't always appreciate that early morning wake up, but no one ever complained. They'd just talk and he'd love it, walking around while talking and showing them things.

It was not always so easy to take drives or go out to eat with Marcus when he was younger, but as he got older, he liked to help Dad look at the map or choose where to go out to eat. He liked making the choices and it was no longer a difficult thing for him but something he really looked forward to doing.

As we look back on Marcus' life, we are so proud of him and can truly give thanks for the young man he turned out to be. We'd had our issues with meltdowns, self abuse, speech delay issues, escaping from the house in the dead of night, and on... but he was such a gift to us. He grew up to love life, he loved to be outdoors, to go kayaking, camping, bike riding, walking and hiking, he loved music, people, and in general he was so happy with who he was. I am envious of the fact that he could read people and emotions and help in ways I'll never be able to do, such was that 6th sense that our children have.

Marcus was one of the unfortunate people to succumb to pneumonia and H1N1. We are so blessed to have had 15 wonderful years to share with him. He gave us much more in life that we ever gave to him. And I think our family and our community would say the same thing.

We are special parents of special children. We have gifts and knowledge gained by experience through trial and error. Just know that our children - with whatever issues they come with - also touch the lives of all those around them. We are so richly blessed to have been given the opportunity to share their lives and they are lucky to have been given us as parents. Consider yourselves hugged by Marcus. :)

Carol and Stan
Parents to Marcus (15 SMS)

(excerpted from Spectrum, Vol 14, Issue 1, Winter 2010)