Stephen - Founder of ALS TDF and Inspiration for PatientsLikeMe
 

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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



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Stephen,was an inspiration to us all. Very sad to hear of his passing.
Lisa

To The ALSKing Stephen Heywood
You have been, and shall continue to be an inspiration for us all.
You will be missed by many.
Enjoy heaven our friend. You’ve earned it

"it has ramps".....oh heart of my heart..beating in time...he's gone home.

You all are such an awesome group.

Stephen Heywood must have been a very strong and special person in many ways.

Rest in peace,Stephen.

My deepest sympathies to all who are grieving for Stephen.

He sounds like a remarkable person, who gave of himself for others.

My thoughts and prayers are lifted for his family and all PALS who will miss him

sincerely
Cheri

Soon as I can I will write something but not today. It's these old tired eyes of mine. They keep watering.

Stephen Update

This morning at 6:30 am 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 are receiving his kidneys and are being given a chance at life. Stephens’s heart stopped at 7:36 am. My family was all together at our parents.

Stephen found a way even in death to help others. He gave so much strength to so many.

This does not end here. Together with Stephens’s spirit continuing to guide us we will take this disease apart and destroy it.

-jamie

Stephen Heywood 1969-2006


Sad, sad news for anyone who saw the recently released "So Much So Fast": Stephen Heywood has passed on. Heywood, the Newton, MA. man whose eight-year battle with ALS was documented in Steven Ascher and Jeanne Jordan's fine film and who received much local coverage as a result, died of a fluke: His ventilator came loose in the small hours of Friday night, leading to brain death and, early Sunday morning, his physical demise.

Following is the text of an e-mail sent to those who knew Stephen by his brother, Jamie, shortly before Stephen died.

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 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 EMTs, 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

I was privileged to meet Stephen last month, at a post-premiere party for "So Much So Fast" held in the Newton Highlands carriage house he can be seen building in the film. Confined to a wheelchair, able only to move the muscles of his eyes, he communicated with well-wishers via an implant in his brain that allowed him to move a cursor on a computer screen, laboriously typing his thoughts and surfing the web as necessary.

He and I talked about the new "Superman" DVD boxed set and "The Fountain" director Darren Aronofsky; when he stumped me on some Aronofsky trivia, he zipped to the Internet Movie Database then and there to prove his point. We traded a few emails after that, and I began to sense the restless intellect and sharp wit that fueled this man, as well as -- far back there -- an intense frustration coupled with a refusal to give into it. It's to my immense personal sorrow that our brief acquaintance is over; Stephen's real work, of course, was to raise awareness of ALS, to spur his brother's research work, and to live a rich and considered life in spite of cruel odds. He is survived by his wife, Wendy, and son, Alexander.

heaven definitely has a new angel.

rest in peace stephen.

my deepest sympathy for his family and friends.

My deepest sympathy to the Heywood family.
Alison

Stephen Update

This morning at 6:30 am 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 are receiving his kidneys and are being given a chance at life. Stephens’s heart stopped at 7:36 am. My family was all together at our parents.

Stephen found a way even in death to help others. He gave so much strength to so many.

This does not end here. Together with Stephens’s spirit continuing to guide us we will take this disease apart and destroy it.

-jamie

A champion for ALS

The 2006 Sundance Film Festival documentary "So Much So Fast," about a Massachusetts man's battle with amyotrophic lateral sclerosis (Lou Gehrig's disease) and his family's reaction to the illness, will have a free screening Thursday at 7 p.m. at the Jim Santy Auditorium, Park City Library Center, 1255 Park Ave., Park City.

Co-director Steven Ascher will take part in a post-screening discussion of the movie and its subject, Stephen Heywood, who died Sunday after an eight-year battle with ALS. The screening is part of the Sundance Institute's monthly documentary series.