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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

(Feedback extracted from emails)

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.

(Feedback extracted from texts)

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

I am forever grateful.. 

Lorraine and Lauren just dropped off the Nightwatch – I can’t begin to tell you what it means to me, I am forever grateful. I’m looking forward to organising a few little fundraisers along with my husband (and George I’m sure) and we are determined to raise the money to fund a monitor for another family in need. I’m touched by the backstory of your wonderful charity & the legacy of Jon. You are doing a truly amazing thing, I’m so sorry for your loss, it hurts me to think of what you’ve been through and your determination to help other families living in fear of SUDEP – I hope that we can help to keep his memory alive too by spreading awareness. I asked Lorraine to keep me up to date with any fundraising in Yorkshire.
You are one very special lady & have made a big impact on our lives – I wanted you to know how much it means to me and my family.
Emma xx
I cant believe how kind you were, funding the nightwatch. It has been a Godsend, I actually feel comfortable leaving the room to tidy up or see to the other kids because I kow the alarm will go off if she needs me. Before we had the monitor I would not leave her side and would just sit and stare at her, even when she was feeling well because I was waiting for a seizure to happen, and that was such a sad way to live. You and your Foundation are amazing and we will always be thankful. 

I am so very grateful

Thank you so much to Jon Shaw Foundation for funding the Nightwatch monitor. They have been very kind and replied to my request with “We’d love to help” 

Now we can relax a little as the Nightwatch monitor will detect Ellis’ seizures and alert us. He has a complex form of epilepsy and is at high risk of SUDEP. Night times a particularly challenging as he has many nocturnal seizures. At 17 years old, having his mum come into his bedroom to check on every little noise does not go down well; now the monitor can do that.