Update

I'm now posting all of the site updates, doctor visits, research news, etc. on my blog: chad.toomee.org
                
About This Site


Talen Michael Campbell, born February 6, 2006, was diagnosed in March 2012 with Duchenne muscular dystrophy.

Muscular dystrophy is a group of inherited neuromuscular disorders characterized by progressive muscular degeneration. Duchenne muscular dystrophy, or DMD, is the most common, and most serious form.

DMD affects about 1 in 3500 boys born worldwide, with the current population of affected boys in the United States hovering around 45,000. Early signs include difficulty with motor skills causing an awkward gait and frequent falls, pseudohypertrophy of the calf muscles, and contraction of the achilles and hamstrings. Children with Duchenne typically lose the ability to walk around 10-12 years of age, followed by progressive loss of the rest of their motor functions. Most are on a ventilator by the age of 20, and while average life expectancy has been increasing due to improvement in care, right now boys with DMD rarely live past the age of 25.

This site started out of a need to sort and categorize information for my own benefit, as a parent of a child with DMD. There is a massive amount of information to digest, and I was running out of space in my Dropbox. I've since added some information about Talen and the rest of our family, including some pictures and info on efforts our friends put in to send Talen to Disney.

For those who aren't into reading scientific journals and medical research, I've started to put together a quick guide to DMD, including a couple of videos under ABOUT DMD on the site menu.

It isn't completely hopeless, though. Resources have been committed to finding a cure, or barring that, a means to ameliorate the symptoms of DMD sufficiently to give the kids a reasonably normal life. Several new therapeutic options are currently in the pipeline that could drastically alter the course of the disease in Talen's lifetime.



Twitter Feed




Upcoming Events Calendar

TalenDMD