07724393057 jsf22300@gmail.com

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.

The NightWatch has been great as it is a real comfort to know that we will be alerted as soon as Ben has a seizure so we can make sure he is safe. The monitor means we can actually allow ourselves to go to sleep confident in knowing we will be woken when he needs assistance. Thanks so much for supplying this equipment, it has made our lives so much better.

 

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

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.

 

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 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

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.

(Feedback extracted from texts)

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)

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