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Testimonials

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 truly Grateful

for all the support and kindness you have offered me and my young son Ronnie age 5,  who suffers from 7 types of Epilepsy.
This has made the world of difference to us. Being on a very low income I would never have been able to receive this life saving equipment, without your support and generosity. Words are not enough to express how I feel. Thank you so much. You are truly amazing. I wish you every success in the future and always with your wonderful Jon Shaw Foundation.

 

Amazing

Thank you so much, it means the world to us.

 

We are so excited

Thank you so much, We are so excited, we cant wait to try the Nightwatch out.

 

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.