Stephen Heywood - Founder of ALS TDF and Inspiration for PatientsLikeMe

Dear Friends,

I am sending this email out to our friends and family about my brother Stephen. Stephen is the brother of PatientsLikeMe’s founder Ben Heywood and long time friends with founder Jeff Cole.

Stephen was the inspiration and Founder of ALS TDF, which was started in our parents Basement in Newton MA and is now the leading research center for ALS.

I read this today in the paper and I thought it was appropriate.

From Martin Luther King’s sermon: Civilizations Greatest Need

"Our material and intellectual advances have outrun our moral progress… It is not enough to have the power of concentration… but worthy objectives upon which to concentrate."

ALS TDF will put out a formal statement shortly.

-jamie

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Dear Family and Friends,

Friday morning at 5:30 I received the call from Wendy that I have gone to bed each night hoping would never happen. I could tell from the sound of her voice that this one was different. When I arrived, their small street was lit up with the flashing lights of two fire trucks, an ambulance, and the police. Going inside past Wendy holding Alex in her arms and into his bedroom I found Stephen. His vent had disconnected, his lips were blue and despite aggressive CPR he looked peaceful perhaps with even a slight trace of a smile. I rode to Newton Wellesley with the ambulance driver who also grew up in Newton and remembered Stephen from other visits.

Between his caregiver Nicole and the EMT’s, Stephen had CPR for over 40 min. I don’t know if it is because he forgot that he was sick or because his heart is larger and stronger than any I have ever known but it restarted. You could actually see the disbelief on the ER team’s faces. You also knew that they were not sure this was a good thing because Stephen’s eyes were not responding at all. They wanted to make sure we understood how bad it was but they missed Stephen’s point as people often do.

Stephen would tell a joke about wanting to die a heroic death. It went something like this. There would be a fire and he would save someone but it would have be a slow fire with ramps because he would be in a wheelchair. I think he found a way to do that.

There is no blood flow to either hemisphere of his brain and he has no EEG signals. Stephen is gone, left in our hearts and in the relationships and structures he has built. Stephen was in command of his world and his body at all times and never lived life on anything other than his own terms. Thursday night before bed he sent an email to Ben saying how wonderful our Thanksgiving was. It was a wonderful Thanksgiving.

Stephen has kept his body alive so that his family and friends could gather and say goodbye. As Stephen indicated he wanted to he will donate his organs to others to give them a chance at the amazing years of life that he gave us. Sometime over the next few days if it is possible some very lucky person will get his heart.

So he found his slow fire and it has ramps.

-jamie



http://www.als.net/default.asp
http://www.patientslikeme.com/forum/show/442