“The relief from that phonecall was immense.”
A few weeks ago we came across this small charity, we had a good look around their website at the equipment they provide grants for and applied for funding for a seizure alert watch.
Last week, I received a phone call from Wendy who told me that they would be happy to fund a seizure alert watch for Morgan. The relief that just this phonecall brought was immense, to know that we would be receiving something that would help to ease the anxiety around Morgan’s seizures was just incredible
I don’t often share how bad things are with Morgans seizures because I don’t think people want to hear about it, but the reality is that it’s rubbish and he has one every few weeks at the minute! There isn’t any seizure control, even with medication!
We received the watch yesterday and we couldn’t be more grateful for it. Thank you again Jon Shaw Foundation 💜
“We are truly grateful.”
“We feel its definitely giving peace of mind for his seizures. Tyler recently had 6 recurrent ones over Xmas at home and was taken by ambulance to our local hospital. This enables medical assistance for Tyler at earliest possible opportunity if needed and also for him to be more aware of oncoming seizures, to make sure he is safe thus reducing risk or harm to him. Once again we are truly grateful to you for supplying this for Tyler and helping to reduce my worries about him trying to live independently with his medical conditions.”
You really are life savers
Jasper has struggled to keep it on but is getting used to it now as it’s referred to his ‘magic watch’! He has been telling his friends at school about his magic watch and that it is special because it tells the phone when his brain is going a bit crackers.
The function to turn the lights off at night but yet still receive an alert is great. The peace of mind this watch has given is immeasurable. We are still physically vigilant about seizures but the fact that the watch signals seizure activity and logs the data is fantastic for analysing emerging triggers. I am also grateful for the better nights’ sleep my husband and I have because the watch sends an alert to wake us. The Empatica Embrace 2 is an invaluable piece of technology for epilepsy sufferers; the lives it could save from SUDEP and the families peace of mind it brings is in my mind, priceless. Thank you so much to the Jon Shaw Foundation for providing us with the Empatica Embrace 2; you really are life savers.”
“She is very happy to sleep back in her bed.”
We recently received the IT care alarm for our daughter who has recently been diagnosed with epilepsy.This monitor helps our daughter sleep safely alerting us of any seizures that make occur in the night. Thanks to Jon Shaw Foundation we now have a peace of mind our daughter will sleep safe with this monitor and she is very happy to sleep back in her bed.
It gives our young man the reassurance he needs to know that he is safe.
We are Truly Grateful
“I cant thank Wendy and the Foundation enough”
Thank you for organising the watch and pillows to be sent to us. Olivia and I are very grateful
“Such a Big Help, We really appreciate it”
Jon shaw foundation have been a massive help and support for myself and my daughter
Thankyou so much
This is fantastic for Seth who will be delighted not to have his mum sleeping on his floor!
Thankyou so much!
Words can not express how grateful I am.
“My son now looks forward to his life knowing if he has a siezure I will be there.”
My son is 16, he started having seizures last year while doing his GCSEs. The stress brought on tonic clonic seizures, and he was later diagnosed with epilepsy. This scared my son and whole family; we were all scared about his future and what it would bring, like leaving school , starting college and life after us. I have done online courses so I understand more about epilepsy. I spoke to my sons epilepsy nurse and was told about Jon Shaw Foundation and so learned more about SUDEP. We never realised as a family how serious this condition was, but after finding out I wanted to protect my son even more. Jon Shaw Foundation helped me get an epilepsy pillow for my son and I gifted me an embrace 2 watch. If my son has seizures during the night or at college, I will be alerted by call and text. I can not say how much relief this has given my family , my son now looks forward to his life knowing if he has a siezure I will be there. I cannot thank Jon Shaw Foundation enough , it’s just a shame that for them to exist it had to come through heart break. I know that all of my family will be donating to this amazing foundation x
I cannot thank you enough!
The watch has given us peace of mind, we feel more relaxed, especially during the night. We have had a few false alarms but slowly getting the hang of it.
We have all had some great nights sleep knowing our amazing resilient young man Morgan is safe throughout the night.”
The Alert-it Pulse Companion kindly supplied by the Jon Shaw Foundation has to a great degree alleviated my anxiety through the night as I can now be sure that if Ronan suffers from a seizure then I’d be alerted by the pager in my bedroom. Just last week I was alerted, I then sat with Ronan until his awareness was normal. Before I had this product, Ronan may have been suffering from seizures where no one would have been alerted and so this adds to the risk of SUDEP.”
Ben was really pleased to be getting back to his “big boy bed”.
I have had better nights of sleep with the peace of mind my daughter is fine.
Brandon loves his new Embrace 2 monitor/alarm.
I am reassured that it will help us monitor his seizures when he awake or asleep.
Thank you again I don’t think we will ever stop saying it!”
Eleanor and I are eternally grateful for receiving her bed alarm and anti suffocation pillow. Hopefully now she can sleep safely and I can rest with a little more reassurance she will be ok
Thank you so much
Thank you so much with the support to help to get Autumn-Roses monitor it’s definitely helped give us peace of mind at night thank you so much.
Thank you so much for everything you do Jon would be so proud of you.
Honestly changed our lives
This Sami kit has already made a difference to all of us. I have been able to sleep in my own room with Rico in his, for the first time since October. It has given me the much needed hour to myself at bed time – even though I watch the monitor constantly it’s the little bit of space we needed between us
I just want to say how grateful I am for your organisations help and support.
Thank you so much, Wendy . Your son would be very proud of you, and his name will always be spoken in our home forever now xxxx
Taylor and his mum made a wonderful video which can be seen on our facebook page. It is clear from the footage how much the monitor means to him.
Thank you so much for my epilepsy alarm.
Jay and his friend Chelsea wanted to fund raise for you for the amazing gift you gave our beautiful boy Albie that means we can keep him safe at night we are so so very grateful to you all for helping our family and our precious boy “
“The Monitor has made our lives so much better.”
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
“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.” – Mum
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.
It has been a Godsend
I can’t believe how kind you were, funding the nightwatch, 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..
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.
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.
Confirmed my suspicions.
The 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
Adams life would be more restricted …
“As a parent I have to say it has bought peace of mind especially when he on his own at times, such a periods when walking home from school. The accuracy of the app is amazing and pin points exactly where he is should he have a seizure. Adam’s life would be more restricted without the amazing generosity of The Jon Shaw foundation, which would not only affect his physical wellbeing but also his emotional well-being too. We are still in the early days but I know this amazing piece of kit will give Adam the social freedom he deserves, and should have as a young teenager. Alongside, reducing anxiety levels of us, his parents, and and also his friends. We can’t thank you enough for your kind generosity for funding this for us and hope you can reach many more people in the future.”