The monitor has made our lives so much better.
Ben was told about Jon Shaw Foundation by the epilepsy nursing team at Stoke Hospital. I am extremely pleased to pass on that he and his family have been told about SUDEP. His mum told me that JSF leaflets are handed out to patients new and old and that she was advised to research SUDEP and look at our website. I’m so happy we were able to support Ben and his family and look forward to hearing from them in the future. A few weeks later we heard from his family.
This device has changed my life
I no longer fear for my safety when I am asleep and feel more comfortable in my own skin living alone as a young person. Thank you to Jon Shaw Foundation for everything you have done for me.
“Cassia has really turned a corner in her confidence since this device arrived, and we got it set up. Before she had this, she felt helpless and scared every day. This device is miraculous and has provided her and myself as her parent on the other side of the country with a huge amount of reassurance and peace of mind that if and when she has a seizure that she can receive help in time.”
A Big Thank You
to Jon Shaw Foundation for funding the Night Watch for Shannon, 19 years old and suffers a rare metabolic condition Fumarase Deficiency and suffers seizures daily. The monitor has made a huge difference to Shannon.
We are so excited
Thank you so much, We are so excited, we cant wait to try the Nightwatch out.
I am truly Grateful
Thank you so much, it means the world to us.
I am forever grateful..
Thank you from the bottom of our hearts
Thank you to the Jon Shaw Foundation from the bottom of our hearts for supplying us with a Nightwatch for Emily. Emily is 3 years old and has Dravet Syndrome. She suffers from complex epilepsy, has hundreds of seizures a day and is at a very high risk of SUDEP, so this has been life changing for us. For more than one reason.
Firstly, and most importantly, it provides another layer of security during the night, when we can’t watch our daughter all the time. Knowing that if her sats drop we will be alarmed and can rush in is amazing.
Secondly, it allows us, as busy, stressed parents, to have a slightly more rested sleep in the safety that her particularly difficult to detect seizures would be picked up. This sleep is vital for us as a family to function on a daily basis. Emily is a full on toddler and we wouldn’t have it any other way. But obviously this needs energy because she can’t be left to walk unaided. Having better sleep means we can face the day and all it offers rather than just about survive it.
We cant thank you enough for listening to our plea for help and supporting us. Thank you.
Our older daughter is going to do a sponsored skip to raise money for you. Part of her challenge is to learn how to skip, which she is currently doing. She’s a determined 5 year old who loves her sister very much so she will be get there.
Many thanks once again.
Gareth and Catherine Mills
We need to get it out there, all about SUDEP and Jon Shaw Foundation. It is brilliant what you are doing. It means so much and you are so strong helping others in the same situation. If there weren’t people like you, the world would be a horrible place. I cant thank you enough for your help.
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NightWatch Monitor has confirmed my suspicions that my son has been having more seizures than originally thought. The unit has been great at picking up the seizures, and has shown that he is having 3 – 4 seizures some nights. We had no idea. Thank you to Jon Shaw Foundation for sorting this out for us
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