For weeks after Adalaide got her diagnosis of Tuberous Sclerosis Complex and Epilepsy I looked into charities for support, grants and funding to help buy equipment to keep her safe not knowing if I should apply or even how todo it. Adalaide was extremely lucky, she was awarded a grant from @uktsa.
Then Jon Shaw Foundation granted us with a fantastic seizure alarm that attaches to Adalaide’s bed, if her watch doesn’t detect a focal seizure this epilepsy alarm does and rings loudly through the house to alert us. Night times in our house are scary
but these charities are changing our lives with their support. Once our lives are settled and into a routine I can’t wait to try and fundraise and give back to them both.
The Embrace watch has changed both mine, and Dexter’s lives beyond belief.
Previously, I wouldn’t sleep in case I didn’t hear him if he had a seizure. Dexter was also worried to be alone. This has given him the confidence that his nominated carer’s will be notified if he needs us. The app is so easy to use. Also been a single parent; without the help of Jon Shaw Foundation it was out of our reach. Amazing and life changing equipment and Wendy has been understanding and caring, so a huge thank you.
“Absolutely changed our world”
Our 4 year old Son Bobby was diagnosed with Epilepsy this year which unfortunately we’re struggling to combat.We were constantly unable to sleep at night worrying he would have a seizure in his sleep and something terrible happen to him. The Jon Shaw Foundation absolutely changed our world with their genorosity when they gifted Bobby an Alert it pulse companion. We can finally rest easier at night knowing he is breathing and being alerted when he does have an issue. Thank you so much!
The Jon shaw foundation has changed our lives.
Our daughter Ruby was diagnosed with epilepsy at 8 months old and has tried a few different epilepsy alarms in the past. We raised funds ourselves to get her the Pulseguard, however they no longer exist. So when our monitor stopped working, we had nobody to contact and we’re unable to sleep well due to the fear of missing a seizure. The Jon shaw foundation helped us to buy the pulse companion and we have been able to allow Ruby that little but of independence she needs. At 8 years old she is more and more aware of the things her peers are doing that she cannot.
We all sleep better knowing we have the monitor to alert us to any seizures. Scarlett is also much happier in knowing the chance of her finding Ruby seizing when she wakes up is massively decreased since having the monitor. Thank you so very much
Our world was turned upside down
We just want to say a heartfelt thank you, for giving my beautiful girl her life back. Needless to say our world was turned upside down when Maisie was diagnosed out of the blue 2 months after her 13th birthday, but by having the Embrace2 and an Epilepsy pillow we feel comfortable knowing she is safe! and that we can get to her when she needs us. Maisie has her independence back and we will be forever grateful for your amazing kindness ❤
“People will be alerted when I have seizures”
The thought of SUDEP (sudden unexpected death in epilepsy) being a real possibility is terrifying.
Thank you so much to Jon Shaw Foundation for funding Theo’s Embrace2 sensor.
Every parent of a child with Epilepsy’s worse nightmare is putting their baby to bed and a seizure occurring which they aren’t aware of. The thought of SUDEP (sudden unexpected death in epilepsy) being a real possibility is terrifying. The Embrace2 has meant we can now sleep with the reassurance that we will be alerted when Theo has a seizure in the night. The Embrace2 has certainly been put to the test! and has worked quickly and reliably every time. Not only does the Embrace2 give us peace of mind – we’ve also been able to capture data about Theo’s seizures which gives us valuable information to share with his Epilepsy consultant.
Orla is keen to get back into her own bedroom…
We are humbled by the generosity and kindness of your charity. Orla’s epilepsy started in March this year and having seen her struggle through tonic clonic seizures whilst she’s asleep has been terrifying, it doesn’t get any easier. My daughter has had her independence taken from her and we find it so hard to sleep for fear of when the next one will happen. This monitor will help get us back to some sort of normality and help us learn to live with epilepsy and rest easier in the hope that we will now be alerted to her episodes. Orla is keen to get back into her own bedroom and have a sleepover with her friends, exactly what any twelve year old should have, this monitor will give her and us the confidence needed for this to happen.
So thank you from all of us, it’s been a tough year and we are so very grateful for Jon Shaw Foundation charity’s generous donation.”
Thank you again for your support,
I really am very grateful, my anxiety levels have definitely reduced a little now, I think it took a while to trust the monitor but it is definitely picking up his seizures.
Will, said that he is glad that mum is better, more reassured and can sleep now, but he said epilepy wasn’t really an impact on him as he was asleep and didn’t know if he’d had a seizure.
I can let Charlie have more independence
The first time the watch picked up a seizure I was blown away with the technology. I obviously had some concerns that it might not pick up Charlie’s seizures or that I hadn’t set up the watch correctly, but it did work and has given so much more confidence. I asked Charlie how he felt wearing the watch and he said “ I love it and it makes me feel better that people will know if I have a seizure” It also means that I can let Charlie have more independence knowing that I will be alerted, also that he can have sleep overs. Although we have a camera set up in his room I often panic that I will miss a seizure and now I have the watch too the camera is a back up.
We are forever grateful for charities like the Jon Shaw Foundation that support individuals and families with children with epilepsy.
I know I can get Cora the help she needs asap.
Jon shaw foundation helped my daughter massively by funding an Embrace watch, she has epilepsy which they can’t control with medication. The watch identifies when my daughter has a seizure and rings my phone to warn me that she needs my help, now I know when she needs me.
She still hasn’t got the confidence even to walk down the street alone since she had big accident at the beginning of the year. She had seizure on the way to school and walked into the road in front of double decker bus. She lost all confidence going anywhere outside on her own, but now when the watch rings me, I know I can get Cora the help she needs asap. We’ve got “find my iPhone” set on location so I know where she is. I would recommend these watches to anyone who has eplipsy, they also detect seizures in your sleep, and could save your life. I am so grateful for the watch.
“New normal of living with epilepsy…”
The equipment has given us all peace of mind and more freedom.
We can now get a goodnight’s sleep
This is Zak, the epilepsy monitor that you funded for us has been of great use. We can now get a goodnight’s sleep knowing that we will be alerted when needed. This of great importance because Zak suffers from mainly nocturnal epilepsy.
Watching your child have a seizure can be distressing
A big thank you to Jon Shaw Foundation
for my new Embrace 2 sensor. The Embrace is helping me regain my confidence to be more independent, knowing if I have a Tonic Clonic seizure, my parents will be contacted immediately.”
We will be forever thankful for Jon Shaw Foundation!!!
Since our sons diagnoses of infantile spasms and early infant epilepsy encepathology this March, I haven’t been able to sleep for more then a few consecutive hours through fear of my son having a seizure in his sleep. Jon Shaw Foundation have lifted the load and provided us with a camera which will not only alert us of any concerns but will also record seizures so we can share them with healthcare professionals.
Now we are getting the rest and the energy reset we need, we can continue to look to the future and focus on making memories with our family which we can cherish xxx
Peace of Mind
OUR LIVES WERE TURNED UPSIDE DOWN
Gives us the reassurance we need.
Ella’s mum, Kim is happy with the changes.
We are so grateful to Jon Shaw Foundation for supplying us with this epilepsy alarm. We have had so many sleepless nights worrying if Ella was going to have a seizure. I was sleeping in bed with her every night. This has now given her the independence to sleep alone and for us as parents to feel reassured that should she have a seizure during the night we will be alerted. Thank you again we really appreciate the help and support.
We can finally sleep better at night..
Thankyou so much for funding the Embrace 2 watch. We have had it nearly 2 weeks now and this is helping us so much. We can finally sleep better at night knowing that we will be alerted to a seizure. Dylan will be able to return to work soon which will make a big difference in knowing that he is safe. So Thankyou again for your kind generosity.
Having a lot more seizures than I thought …
The watch has been amazing, Harry is having a lot more seizures than I thought to be honest. Its helping our minds to be at ease though, especially at night. I slept for 6 full hours the other night for the first tie in years.
A huge thank you to the Jon Shaw Foundation for the support to get this cutting edge bit of kit.
We are now able to sleep with a little more ease, thank you.
Without the Jon Shaw Foundation we would not have been able to purchase this sensor.
Receiving our daughters sleep sensor pad to alert us if she has a siezure at night, has made such a difference to not only our daughter True, but to the whole family. We are able to sleep with a little more assurance which is so so helpful. We can not thank The Jon Shaw Foundation enough. Their support in getting this meant that we were able to have the best equipment available for our young daughter, which is amazing. They were so fantastic to work with and we recieved our equipment so quickly, which was great, so we could start sleeping better much sooner than we thought. The whole process was just amazing and we could not have felt more supported. It is just amazing that an organisation exists like this to help us get something that makes such a big difference to our lives. It was such an easy process, which we were so grateful for, as with a new diagnosis of epilepsy, everything has been stressful, and this definitely was not!! Without the Jon Shaw Foundation we would not have been able to purchase this sensor, we can not thank them enough.
Early days, keep at it.
That’s the impact of the kindness & generosity of the Jon Shaw Foundation. Both of our daughters (Lucy & Tabitha) have epilepsy. They have tonic clonic seizures and Tabitha, now 9, has a history of Status Epilepticus. Jon Shaw Foundation funded Empatica Embrace2 monitors and for the first time in two years, we slept. Not woken every few minutes by camera alarms or fear. The monitors have added peace of mind, the smallest sense of control and most importantly for our girls (especially Lucy at 16) it’s given them some independence back. From the bottom of our hearts, thank you. It’s tricky to articulate just how much it means to us all. Thank you simply isn’t enough.”💜
“Doing things for himself without us watching every move”
“Thank you so much for James’s embrace2 watch. It has brought great peace of mind to both us and James whilst he is sleeping and doing his everyday tasks, because of his Autism it has proven difficult for him to have any kind of independence before we got this watch but we now feel easier allowing him to do things for himself without watching his every move, knowing that we can help him if needed. We are so grateful to you for supporting families like us and can’t thank you enough.”
“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
“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.”