About Talen


Talen was born a few hours after the Steelers beat the Seahawks in SuperBowl XL, on February 6th, 2006. Our second child, he was born a little over two years after our oldest daughter Isobel, and just over a year before his younger sister Raven.

Talen was born with a smile on his face. Lisa took to calling him our "Happy Smurf" as he toddled around the house laughing. He cried, and there were tantrums to be sure (like any kid his age), but any stormcloud hovering over him seemed to pass quickly, and in no time at all he was right back to laughing and playing.

We had no reason to suspect he was anything other than a normal, healthy little boy. Lisa had no family history of any sort of genetic disorder, and while he seemed to hit some of his early milestones later than his sisters, he was still well within the norm.

A few days before his sixth birthday, Talen came down with what seemed like a normal cold, but quickly turned into a serious pneumonia. We spent four days in intensive care and five more in the children's hospital. During the routine bloodwork, doctors found some results that were abnormal. After several follow up visits to perform more bloodwork, we were told that Talen had Duchenne muscular dystrophy. Later, genetic screening confirmed a deletion in exons 48-54.

Today, Talen is still as happy and active as he has always been. He likes to joke and make people laugh, and he will do just about any silly thing to see someone smile. He isn't the fastest or strongest kid on the playground, but he never seems to worry about it.

He is currently attending Matthews elementary, and he will be going into the first grade this year. Like a lot of young boys, he isn't the biggest fan of school, but he loves to learn new things. Any new activity is always met with an endless barrage of questions and observations.

Talen has two sisters, Isobel (older) and Raven (younger) and a guinea pig named Flash. He loves comic books and super heroes, and has a vast knowledge base pertaining to super heroes, their origins, and their villains. He enjoys all types of video games and a recently discovered fondness for laser tag.

At age six, it was difficult to tell the difference between Talen and most healthy six year old boys. He ran a little slower than other kids his age, but it didn't seem to impact his willingness to run around and rough-house with other kids.

At age seven, we have started to see more signs of the disease's progression. Getting up the stairs at home is starting to become difficult, and he is a little less active than years past.

We hope that researchers will find a way to arrest the progression of the disease and give Talen an opportunity to live a full and happy life.
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