The phone rings at 6AM. Something else happens inside, a feeling that something is horribly wrong. This morning, the window of my blackberry said “BRIAN D” – Brian Denger. I imagined Brian running through the snow, nails in his sneakers to cut through the ice on the streets in Biddeford Maine.


Brian’s voice, normally calm and controlled, faltered and hesitated. I listened to the sound of a father’s breaking heart.   


Matthew died. Matthew died. Silence. Matthew died. After some moments, Brian said that Matthew was having some trouble breathing. Brian sat Matthew in his chair to improve his ability to breathe. Matthew became confused. His heart rate was variable and then it stopped. Brian tried CPR. 911 was called. Matthew was gone. Alice and Patrick looked on.


While we once believed Duchenne was the biggest issue, it is heart failure – it is a disease that has all the power. Our fight is for our sons’ lives. Their fight/role is their disability. 


Matthew was being evaluated for the ICD which may have given him more time. We can imagine that the ICD might have prevented the arrhythmias last evening. But, I have learned that ‘if onlys’ don’t count: re-thinking decisions, trying to rewind the clock of time to intervene. 


It was Matthew’s time. I have to believe that we all have a time, that we are all given a specific amount of time. And I think we are all given a job to do and a journey to follow. This one – Duchenne – is ours together with many others.


Matthew’s death can stop us, make us feel like diving under the covers, but that won’t work and it will waste precious time. And we all have a limited number of minutes.   


Hug your family and gather your strength.  


We need to learn from this, work with experts in the community to set standards for ICD, for VADs. We need to be proactive. It is the only way forward. In honor of Matthew.


Sending our best love and thoughts to Brian, Alice, Rachel, and Patrick. 

Pat Furlong, Founding President, CEO
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Comment by danielle on March 5, 2013 at 10:46am

every time i read something like this it breaks my heart because none of us know when this can happen to our sons. to this family i offer my deepest sympathy and i hope you have found peace in knowing hes in a better place where he can walk and run.

Comment by Bains on February 28, 2013 at 12:16pm

My heart breaks for Matthew's family. I hope they find strength and comfort in his memories.

Comment by Perlita & Gordy Hains on February 28, 2013 at 11:09am

it's been 3 days and I still can't muster enough courage to tell my hubby - he adores Brian!  Brian was the 1st dad Gordon met in this wild DMD journey. Having to tell Gordy that Brian's oldest son Matthew died is heart wrenching. Behind the smiles, we all grieve... my heart is with Brian, Alice and family - we love you!


Comment by Penny Pratt on February 27, 2013 at 7:14am
My thoughts and prayers are with your family. HUGS
Comment by Trinh Nguyen on February 27, 2013 at 2:47am

My heart is so heavy. Pray for the family.

Comment by Andrea Cleary on February 26, 2013 at 6:59pm

Our thoughts are with you.

Comment by BeritSofie on February 26, 2013 at 5:33pm

Our deepest sympathy from Norway.

Comment by Pat Moeschen on February 26, 2013 at 5:22pm

There are no words. Brian and his family have fought for this community for over a decade. Now we must raise him and his family up. Prayers and thoughts are with you.

Comment by Keith Van Houten on February 26, 2013 at 5:04pm
An inspirational young man, from an inspirational family. I'm truly heartbroken for you.
Comment by Donna on February 26, 2013 at 4:25pm

Instant sorrow.  I met Brian at the Chicago marathon when my husband and I ran it for Run for Our Sons.  I'm heart broken for Brian and his family and for all of us.  Hugs & Prayers to his family.

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