I'm so proud of you for making this and for everyone that took part! Truly harrowing and had to keep pausing for the tears. It was a privilege to be a part of this. Sending love to you all and everybody affected by SUDEP 💜💜💜
Thank you for working so hard on this! Thank you for including my boys James and Joseph. I really believe that that more people becoming aware of SUDEP can lead to more Epilepsy research funding.
@Stacie75 it was a painful privilege and honour to include your James and Joseph and yes there needs to be so much more funding for epilepsy research. Thoughts are with you. Jo x
I would like to extend my condolences to you and your whole family. A difficult, emotional video to watch but and our sincear thanks for putting together this excellent resource. I hope this gets a lot of views- Chris (Director of Antree Training)
@@thepeterdoodyfoundation683 Hi Joanne. Would you be OK if I shared a link to your video? I think it should be watched by anyone caring for/supporting anyone with epilepsy, including staff working within health and social care.
Jo.. so incredibly hard to watch, (and hear) but excellently put together. A massive well done to you. It really needs to be out on the biggest platform that it can be! Such an important message for everyone to hear. I’m so shocked that such a simple clear message, seems to be so difficult, for those in charge of a “fatal condition” to convey. It feels criminal. As a mother .. it’s difficult to imagine myself being left with that conclusion .. the loss of my child purely because it is a difficult conversation and the accountability of advising could become problematic!! Well THEY are responsible and should be accountable for life of the human beings they are involved with. It’s what they signed up to do. This film will save lives in Peter’s name and of all those who took part 💜 Love to all those suffering with epilepsy, and those who are affected by SUDEP💜
My son passed away 12yrs ago today we were NEVER made aware of SUDEP, from the bottom of my heart thank you so much for raising awareness. R.I.P Billy forever 19 So sorry for the loss of your children 😢😢😢
Harrowing. Completely and utterly beggars belief that this information is kept from patients and their families. In what world is it possibly okay to withhold what could be lifesaving information? To deny the options to take precautionary steps? To make it a lottery of who will die from not knowing? 'Don't ask, don't tell' is a total cop out. Who can ask, what they don't know to ask? Total respect to Jo, Andy, 💜Peter💜 and all participants for this film. Hope it serves to Stops SUDEP Silence ... and soon.
So hard broke my heart i had lost my son from something else which was bad enough,Then to lose my wife through CJD, Then to lose my granddaughter through epilepsy at 19Years old i was in the house with my grandson he had phoned the ambulance i would had moved heaven and earth to save her but all i could downs to pray the ambulance and medical peopled all they could do what is life about i am an oldie .
This was a hard watch.. however informative and enlightening I am a parent of a child with epilepsy and having sat through many consultations sudep has never once been mentioned… 😢 I am so sorry for your loss but I thank you immensely for the information as it was not put to us by neurology
Hello Andrea. Thank you so very much for taking the time to comment and for watching the documentary. It is appreciated. I am so deeply sorry that you were not informed of SUDEP by neurology. You should have. Please do contact the foundation if you feel we can support you in any way or to talk. Warm Regards Joanne
Hello Paul, Yes of course. You are welcome to contact our charity. Our details can be found @peterdoodyfoundation.org or there are people to speak to at Epilepsy Action or the Epilepsy Society. Warm Regards Joanne
I'm so proud of you for making this and for everyone that took part! Truly harrowing and had to keep pausing for the tears. It was a privilege to be a part of this. Sending love to you all and everybody affected by SUDEP 💜💜💜
Thank you so very much @elouisevepilespy and for your courage and kindness in taking part and supporting this project. Joanne x
Thank you for working so hard on this! Thank you for including my boys James and Joseph. I really believe that that more people becoming aware of SUDEP can lead to more Epilepsy research funding.
@Stacie75 it was a painful privilege and honour to include your James and Joseph and yes there needs to be so much more funding for epilepsy research. Thoughts are with you. Jo x
I would like to extend my condolences to you and your whole family. A difficult, emotional video to watch but and our sincear thanks for putting together this excellent resource. I hope this gets a lot of views- Chris (Director of Antree Training)
Thank you Chris for sending your condolences and for your valued comment. It is really appreciated. Joanne.
@@thepeterdoodyfoundation683 Hi Joanne. Would you be OK if I shared a link to your video? I think it should be watched by anyone caring for/supporting anyone with epilepsy, including staff working within health and social care.
Absolutely. Yes please do Chris. I would really appreciate that 💜🙏🏻
Jo.. so incredibly hard to watch, (and hear) but excellently put together. A massive well done to you. It really needs to be out on the biggest platform that it can be! Such an important message for everyone to hear.
I’m so shocked that such a simple clear message, seems to be so difficult, for those in charge of a “fatal condition” to convey. It feels criminal.
As a mother .. it’s difficult to imagine myself being left with that conclusion .. the loss of my child purely because it is a difficult conversation and the accountability of advising could become problematic!!
Well THEY are responsible and should be accountable for life of the human beings they are involved with. It’s what they signed up to do.
This film will save lives in Peter’s name and of all those who took part 💜
Love to all those suffering with epilepsy, and those who are affected by SUDEP💜
Really appreciate your comment @JoanneMurphy-r5w Thank you.
My son passed away 12yrs ago today we were NEVER made aware of SUDEP, from the bottom of my heart thank you so much for raising awareness.
R.I.P Billy forever 19
So sorry for the loss of your children 😢😢😢
Thank you for commenting @xstarchildxx it is much appreciated. So sorry for the loss of your Billy.
Harrowing. Completely and utterly beggars belief that this information is kept from patients and their families. In what world is it possibly okay to withhold what could be lifesaving information? To deny the options to take precautionary steps? To make it a lottery of who will die from not knowing? 'Don't ask, don't tell' is a total cop out. Who can ask, what they don't know to ask?
Total respect to Jo, Andy, 💜Peter💜 and all participants for this film. Hope it serves to Stops SUDEP Silence ... and soon.
Thank you for your comment @christinebeal187 Yes we just didn't know..........
So hard broke my heart i had lost my son from something else which was bad enough,Then to lose my wife through CJD, Then to lose my granddaughter through epilepsy at 19Years old i was in the house with my grandson he had phoned the ambulance i would had moved heaven and earth to save her but all i could downs to pray the ambulance and medical peopled all they could do what is life about i am an oldie .
So deeply sorry for all your losses @anthonyhibbard7506
This was a hard watch.. however informative and enlightening I am a parent of a child with epilepsy and having sat through many consultations sudep has never once been mentioned… 😢 I am so sorry for your loss but I thank you immensely for the information as it was not put to us by neurology
Hello Andrea. Thank you so very much for taking the time to comment and for watching the documentary. It is appreciated. I am so deeply sorry that you were not informed of SUDEP by neurology. You should have. Please do contact the foundation if you feel we can support you in any way or to talk.
Warm Regards
Joanne
💗
I would like to ask is there any website or can i possibly speak to someone with regards to epilepsy?
Hello Paul,
Yes of course. You are welcome to contact our charity. Our details can be found @peterdoodyfoundation.org or there are people to speak to at Epilepsy Action or the Epilepsy Society.
Warm Regards
Joanne