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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