07724393057 jsf22300@gmail.com

Oscar is loving his watch

We’ve received the watch, I’ve just been setting it up. Thanks again. Oscar is loving it. 
Jenny

Mum

“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 💜

Adele

Mum

“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.”

Catherine

Fantastic organisation changed my family’s life.

The alarm was easy to set up , the instructions were simple to follow.  My son Kyle suffers from seizures without warning which cause him to stop breathing and require CPR. Kyles mum and I had to take it in turns laying on his bedroom floor with a hand on his chest to make sure he was breathing through the night . Nearly 18 months we lived like this , which in turn caused me to leave my job to care for Kyle. Thanks to Jon shaw foundation , we now have a monitor that detects if Kyle stops breathing during his sleep which then sets an alarm off to a pager in our room. I have recently started work again and Kyle is medicated for his seizures, without the charity work of Jon shaw I don’t know where my and my family would be today. Fantastic organisation that has changed my family’s life , thank you very much , Paul , Sarah , Kane and Kyle.
Paul

Dad

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.”

Melanie

MUM

“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.

Thankyou very much for your support and fast response and delivery.
Jessica

It gives our young man the reassurance he needs to know that he is safe.

We would like to say a huge thank you to the Jon Shaw Foundation for providing an Embrace 2 alarm for our foster child. He has complex needs and Epilepsy. After having a discussion with our consultant about SUDEP which frankly scared the hell out of us. He suggested we purchase a motion sensitive camera and a device that alerted us when he has seizures during the night. We can’t possibly stay awake all night every night so this device gives us peace of mind and allows us to sleep. It also gives our young man the reassurance he needs to know that he is safe and that we will be there quickly if a seizure happens. The device came quickly and we can’t wait to use it. Wendy’s communication throughout was excellent and I am so glad there are wonderful people like Wendy and her team in this world. My next fund raising efforts will be to help these wonderful people. 
Beverley

We are Truly Grateful

Ellie has had a convulsion tonight and we were down stairs we were notified straight away thanks to the device. We are truly grateful thank you so much. 
Lisa (Mum)

“I cant thank Wendy and the Foundation enough”

I contacted Jon Shaw Foundation after seeing the charity details on the Epilepsy Action website.  After a recent diagnosis of epilepsy for my daughter, she has had full tonic clonic seizures which can come on at any time, we don’t get any warning, neither does my daughter know when it’s happening.
My daughter is 12 years old with a social life in and out of school.  For her to be able to still have some freedom we approached Wendy to see if she could help with financial assistance for an epileptic detection wristband.
Wendy has been lovely throughout and understanding which is very much appreciated at this time.
With no hesitation Wendy donated enough money so that my daughter can have an Embrace 2 wristband which is an amazing piece of equipment.  
Embrace 2 band is easy for my daughter to use with her phone and gives us peace of mind that she is safe and we will be alerted if she does have a seizure when we are not there.
Tracy

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”

I just wanted to say thank you to all for funding Sami kit. Honestly it’s such a big help we really appreciate it. Now we can have better sleep at night not worrying about him and we dont need to keep checking him in his room as we can see him sleeping.”

Jon shaw foundation have been a massive help and support for myself and my daughter

I would like to thank the Jon shaw foundation for all of their constant help and support always ! After my daughter was diagnosed with epilepsy in February it was extremely tough and hard at first and every thing was completely new to us. It was extremely frightening to get a call from school saying I had to come quickly as my daughter was having a massive seizure and the ambulance was on the way. The seizures became more frequent after a few days of being home, then the most frightening one was being taken totally unaware of nocturnal seizures.
One evening Hearing the most awful noises coming from upstairs and rushing upstairs to find my daughter having a huge seizure in her sleep 🥲 this was extremely frightening. Still new to epilepsy I thought surely this is it now please no more scares  but yet again a few days later while out walking my daughter had another big seizure it happened so quickly and impossible For me to stop her falling as she fell down so fast causing a nasty injury to her head and leg.
The Jon shaw foundation have been a massive help and support for myself and my daughter, from messages of advice and support but most of all recently I can never thank them all enough , the Jon shaw foundation have funded a seizure alert watch for my daughter. This is such a great safety reassurance for both of us, it will alert us of any activity before a seizure, the watch connects via Bluetooth to an app on my daughters phone and on the app we have added a few contacts including me and a close friend, we get an automated call and text whenever there is a seizure.
This really does relieve so much stress and worry and especially at night as I was always frightened of not hearing my daughter in time.
Thank you to this such amazing charity, Jon Shaw foundation for so kindly funding the seizure alert watch, my daughter Angel and I will for ever be grateful
X💜
Diane Perkins

Thankyou so much

This is fantastic for Seth who will be delighted not to have his mum sleeping on his floor!

Thankyou so much!

It really has helped ease the anxiety around her seizures for myself and her.”
Clare

Words can not express how grateful I am.

On the 17th August 2022, my life changed forever when Layla had a seizure and I called an ambulance. She had an further full blown seizure whilst admitted in hospital when she was fast asleep. Although Layla has significant needs, which relate to her development and learning, she had no previous history of seizures. I was lost and had no clue about Epilepsy, but one of the things which worried me was SUDEP (Sudden unexplained death in Epilepsy). This is terrifying for any parent.
The future seemed very worrying especially that Layla is non verbal which prevents her being able to discuss with me her feelings and tell me whether she’s had a seizure. Needless to say from that moment I was constantly concerned about her, terrified she would have a seizure in her sleep and I wouldn’t get to her in time.
The hospital, Layla’s doctors and the Epilepsy nurse have been great, they recommended a seizure monitor/alarm which would alert me of any seizures Layla had in her sleep. When it comes to my daughters life this is something which was extremely important to me especially it being a device which could help save her life. Unfortunately further down the line I learnt these were not available on the NHS and were very expensive.
I was informed about the Jon Shaw Foundation, a charity set up to honour their sons memory.  This is an amazing kind, thoughtful and helpful charity, but the reason the charity was set up is a tragedy.
Jon Shaw Foundation very kindly donated an Epilepsy seizure monitor / alarm for Layla. Words can not express how grateful I am, it eases my worries and gives me the opportunity to be there for Layla should she have an seizure which was of my biggest concerns. Thank You ❤️
MUM

“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 Sami epilepsy camera you kindly funded will pick up any suspicious epileptic activity from Livi in her sleep, this together with her brio watch will hopefully keep her safe and notify me that she needs help. Living with a child with epilepsy is so scary, I am constantly on edge and petrified of SUDEP, this will help to put my mind at rest. 

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”.

We just want to say thank you so much to Jon Shaw foundation for supporting our family and providing Ben with a seizure monitor and safety pillow. Last night, Ben was able to sleep in his own bed for the first time in months and he was really pleased to be getting back to his “big boy bed”.
This goes a long way to returning to a more normal routine for our family after a very traumatic few months since Ben was diagnosed. Having the monitor and pillow will allow us to have peace of mind at nighttime and give Ben much more independence.
Thanks so much again
Hannah

I have had better nights of sleep with the peace of mind my daughter is fine.

Thank you so much to Jon Shaw Foundation for funding my daughters Embrace 2 Epilepsy Sensor Watch. It has been amazing; it has given me, as Annabel’s parent and carer, peace of mind that Annabel is safe at night and daytimes. Previously I would have to keep checking on my daughter frequently every night, but since receiving the Embrace 2 Epilepsy Sensor Watch I have not had to check so often as the watch alerts me when Annabel is having a seizure. I have had better nights of sleep with the peace of mind. I am able to provide this information to my daughter’s Consultants at the Hospital. I would highly recommend this device as it is providing myself and daughter peace of mind while living with her drug resistant complex epilepsy. Thank you so much to Jon Shaw Foundation for helping my daughter Annabel. Many Thanks
Mum

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!”

We would just like to say a huge thank you to you all for the help & support you have given to us & Evie. We are so very grateful to all the fundraisers & trustees. It’s been a very scary 8 months & we are learning new things about epilepsy day by day  each day is very different.
But it’s that extra piece of mind that we have knowing that Evie is that little bit safer during the night especially. From the bottom of our hearts thank you so much. I’m sure Jon would be very proud of all the fantastic work you all do in his memory.
Thank you again I don’t think we will ever stop saying it!”
Mum

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 😊

Mum

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.

Mum

Thank you so much for everything you do Jon would be so proud of you.

Mum

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 ❤️

Mum

I just want to say how grateful I am for your organisations help and support.

With the medpage monitor I feel a bit
More at ease to and am able to get a bit
More sleep at night without staying awake all night, hovering over his cot, constantly worrying that I may fall asleep whilst he has a seizure. Thank you so much for your help and I appreciate how quick you were able to order the equipment for us. From the first call we made we were treated with so much care and understanding. I honestly can’t express how much we appreciate the Jon Shaw Foundations support. Thank you so much.
Mum

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. 

Mum

Thank you so much for my epilepsy alarm.

“My name is Derry. I’m 13. I have Lennox Gastaut Syndrome, Down Syndrome, and ASD. Thank you so much for my epilepsy alarm. I’m very happy my mum and dad are going to sleep soundly knowing they have something to rely on in the event of me having a fit whilst I’m sleeping.
It’s perfect as it’s wireless, and I won’t even know it’s there.”
Mum

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 💙“

Mum

Thank you so much to the Jon Shaw Foundation and in particular Wendy for her support and in helping us secure the necessary funding in order to purchase a seizure device/monitor for our son Theo who is 5.
Theo who is also autistic; was diagnosed with Focal Seizure epilepsy in early December last year and has had a fair number of seizures since.
It was really important to be able to have something to help monitor him particularly at night times while he is sleeping incase he struggled or needed to be given his rescue medicine. The thought of him having one alone while he sleeps was really quite stressful and worrying. There does not appear to be a particular monitor or device that is created specifically for focal seizures, but we chose to try out the pulse companion which helps to detect heart rate changes. Ideally, we really needed the Night Watch monitor, but this one is still currently unavailable in the UK due to law changes after Brexit. The Pulse Companion was available and the Jon Shaw Foundation helped us with the funding and ordering of the device.
Thank you so much, you have no idea how much it meant to receive such support in this way. The Jon Shaw Foundation have been absolutely amazing 💙❤️
Mum


“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.

Ben and Mum

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

Cassia and 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.

 

Kerry - Mum

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.

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.. 

I can’t begin to tell you what it means to me.  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. 
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

 

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.

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.”

Melissa

Testimonials