12 full
Sex: M
Data Quality: 2 stars
ALS: 9 yrs
Ventilator Wheelchair Feeding tube
Bulbar: severe
Arms: severe
Chest: severe
Legs: severe


Male, 37 years
Newton, MA

Primary condition
First symptom
Nov 26, 2006
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About alsking101

Stephen Heywood passed away at Thanksgiving of 2006. His wonderful wife and amazing son still live in Newton, MA. Stephen is the inspiration for PatientsLikeMe and his story is profiled in the documentary SO MUCH SO FAST.

Posted by Stephen's brother Jamie... Saturday, November 25, 12:49 PM

Dear 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 a police car. 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 Wendy, his caregiver 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 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.

Sunday, November 26, 11:03 PM Stephen Update

This morning at 6:30am Stephen went into surgery after being declared legally brain dead. Wendy quietly sang Arms of an Angel by Sarah McLachlan and then we walked him down as a group. His body fought for 2 days to enable him to donate his organs in the best way. As I write this two patients, age 33 and 47, are receiving his kidneys and are being given a chance at life. Stephen's heart stopped at 7:36 am. My family was all together at our parents. Stephen found a chance even in death to help others. He gave so much strength to so many. This does not end here. Together with Stephen's spirit continuing to guide us we will take this disease apart and destroy it.


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