There’s no more checking 100s of times a night.

This is Lacie who is now 12. She started having seizures out of blue June 6th 2022. In the August of 2022 She was Diagnosed with Epilepsy. As this is for any parent it made us feel we could not look into the future and that Lacies future was bleak. However, I contacted Wendy to ask for help. What came out of that contact was an Embrace2 watch. This watch can only be described as a miracle. It has give us and most importantly a growing teenager her life back. There’s no more checking 100s of times a night. No more watching her on camera when she wants her own space. No more leaving doors open so we can hear her. Most importantly no more panic no more exhaustion and no more stress. Wendy and the Jon Shaw Foundation are a God send. We has a family can not thank them enough. 
Wendy thank you so much.

… A better night’s sleep at last!

Since we were last in touch, Lia has been diagnosed with focal epilepsy and is now on medication.  The pulse companion really does give me a better night’s sleep, at last. 

I dont feel scared anymore

I can not thank the Jon Shaw Foundation enough for providing Tate with a Monitor. You were very helpful and also very quick !! A big thank you from Tate. xx
Also a message from Tate about his monitor and how it’s not just helped me but also him. 
“I like my monitor that Wendy got me. It is special. It tells my mum when i get those funny feelings. So I don’t feel scared any more” by Tate Hope

… it has giving us great peace of mind

Just want to say a huge thank you for sending us the Sami 3. We can now go to bed knowing seizures will be captured and it has giving us great peace of mind.

Thank you Jon Shaw Foundation

I would like to thank the Jon Shaw foundation for such a simple process of applying, I’m still shocked at how simple it was and how quickly the monitor arrived. 
Getting the epilepsy diagnosis wasn’t the scary part for me, it was once we had started medication and knowing that the seizures were still coming day and night. We are still in the process of getting the medication right but with the Sami 3 monitor I can play back all motions daily to get a better understanding of what my child’s normal sleep pattern is (because let’s face it, who knows what their child does in their sleep!!), I’ve learnt a lot seeing what goes on in the night, which can be scary  but so very important in knowing that the medication is doing what it needs to aswell as making sure your child is safe. I know now that I will be alerted should she have a seizure lasting longer than the set amount of time which gives me the chance to sleep and know I can get to her when she needs me. 
Thank you Jon Shaw foundation 

Huge Heartfelt Thanks

With huge heartfelt thanks to Jon Shaw Foundation for phoebe emabrace 2 and anti suffocation pillows. Phoebe was diagnosed last year with epilepsy, its been a real tough 6 months but with this added technology it will give us great peace of mind and hopefully to be able to sleep. thanks again x
Katie

We go to bed scared every night

We are hoping as parents the Sami complete kit will give us peace of mind & save Aaron’s life. His seizures are nocturnal, so they only happen when he is sleeping. To be honest we feel like we haven’t slept a whole night out of fear since his first seizure in 2020. We are always on high alert. We go to bed scared every night. 
We have found Aaron blue, and unresponsive on many occasions, not knowing how long he has been in this condition. Minutes, or hours? We administer his rescue medication, and pray it will work. 
It is so very traumatic and every time we end up in resus, we think here we go again, please let him live. 
We are very hopeful that the equipment will be a lifesaver. We are extremely grateful to Jon Shaw Foundation. It means so much to us as parents to finally have peace of mind. 

Our little girl was exhausted 

Last December at 3am, Evelyn had another seizure. It was by chance that I woke up and heard her aspirating. We had only had one other night time seizure before this, her first ever one. Unfortunately this one would set the tone of how serious Evelyn’s condition is. A string of back to back monthly hospital stays due to status epilepticus and our luck ran out. By December, our little girl was exhausted and ended up needing to be put on a ventilator to attempt to control her 4 hour long seizure. Unfortunately her rescue medications at the time didn’t work (we are on a better one now) and she ended up getting jaw lock too. Evelyn has since been found to have CACNA1A and will forever be at risk for these horrible seizures.
 
After this horrific event, we started researching different monitoring solutions for Evelyn during the night. They were all beyond what we could afford. Especially as we were still awaiting a DLA decision, plus paying for private physiotherapy on top of the cost of parking and other hospital related costs. Then I stumbled onto the Jon Shaw Foundation’s website and read a story that touched my soul. I sent them an email asking if there was anything they could do to help and after a few lovely emails we were told they could help us!
 
No amount of words in the world could describe our gratitude as a family to the Jon Shaw Foundation. They’ve allowed me (mum) to actually be able to sleep at night and turn off my 3 alarms to check on Evelyn by kindly providing us with a SAMI-3. 
 
The SAMI can alarm us to repetitive or suspicious movements meaning we can rely on it to alert us if Evelyn ever has another night time seizure. This has also given us the confidence to eventually let Evelyn move into her own room.
 
So thank you to the Jon Shawn Foundation. What you do is amazing and we are eternally grateful for your incredible help.

This is Mayson

Mayson’s epilepsy stems from a brain injury he suffered when he was 15 months old. We received the Medpage mp5v2 monitor and it has been a great help so far. It has put us at ease at night time as we will be alerted to any seizure activity and we can view the monitor from anywhere on our phones. It has given us hope that one day Mayson will be able to go back into his own room.
The application process was very straightforward and was handled very quickly, and Jon Shaw Foundation handled the order brilliantly. Thank you so much!

Jacob will be able to start sleeping in his own room again.

Thank you to your amazing charity my son jacob will be able to start sleeping in his own room again,  jacob has complex medical conditions and has seizures daytime and night time. With the help of the sami cam I have been able to see and hear jacob at anytime of night and am notified if there is activity. I can not thank you enough for giving jacob some independence and allowing him to be like his sibling who sleep in their own room. With out all the support and fundraising this would not of been possible, we are hoping as a family to be able to raise funds to help other children like jacob. Thank you again for all you do.

Sian

The peace of mind this gives me and Ada’s dad …

 

I would like to say a huge thank you to Wendy and the team at Jon Shaw Foundation for getting us the SAMi monitor.
Ada was only 4 months old when she began having seizures. Unfortunately our council area won’t provide any monitors or seizure alarms. Due to Ada’s age and size attempts from the epilepsy team to secure an alarm from other charities failed, as she just doesn’t weigh enough for a sensor mat to be effective. After some long internet scrolls and research I found the SAMi sleep monitor. As with a lot of these things unfortunately it comes with quite a high price tag.
After chatting with the owner of SAMi, Matt Anderson, he told me about Jon Shaw Foundation and the wonderful work they do and he put me in touch with Wendy.
The peace of mind this gives me and Ada’s dad knowing we are alerted to any unusual movement and can record any incidents to send on to the consultant is huge. Maybe now we can get a little bit of sleep, and in good time to know Ada can go into her own room.
We joke about Ada being in our room with us until she’s 20 but in reality you want as normal a life as possible and part of that is the independence of being in her own bedroom.
So from Ada, mummy and daddy thank you very much Jon Shaw Foundation.

Danielle

Massive thank you

We would like to say a massive thank you to the Jon Shaw foundation for giving us the opportunity to have the sami3.

Abigail has a very rare genetic condition pgap1, type one diabetes and myoclonic jerks.
But always has a smile on her face daily and is a very determined little girl.
She has not had a full night’s settled sleep since 6 months old, she is now 7. As never got to the bottom of night time issues.
We are really hoping that sami3 will give us the answers we need.
So thank you all very very much for you very kind epilepsy monitor. 
From Abigail 
Her mummy, daddy and brother Austin 
Zoe

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.

Tania

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.

Julie

“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!

James

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

Tania

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 ❤ 

Laura Jean

“People will be alerted when I have seizures”

The watch has been a great help to Kara and us. Kara feels better knowing that people will be alerted when she has seizures. As a family it has made things easier as we can sleep knowing our phones will alert us thanks to the app that goes with the watch. It has picked up the 3 seizures she had during the summer hols and alerted us.
Kara was happy to share a photo of her watch
Mandy

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.

Charlotte

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. 

Toni

 

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.

 

Sarah

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.

Jade

“New normal of living with epilepsy…”

We can’t emphasise enough, how grateful we are to Jon Shaw Foundation for funding a SAMi monitor for Oliver. Now we have a system in place to keep an eye on Oliver while he sleeps we can see forward to a new normal of living with epilepsy, without needing to be overbearing in terms of proximity to Oliver while he sleeps. We’ll probably never stop the dread or apprehension of when/if the next Tonic Clonic seizure will occur; but the monitor will allow us to rest easier knowing that we will be there promptly for Oliver in that eventuality. Thank you
Adam

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.

Thank you. 

Kerry

Watching your child have a seizure can be distressing

Amira wears the pulse companion on a night, we have set the heart rate parameters for when we want to be alerted.
As you can imagine watching your child have a seizure can be distressing for any parents and finding out Amira had epilepsy has really changed the life we live.
What was even scarier for us was hearing about SUDEP by our epileptic nurse, this is when we knew we needed to purchase a device.
We decided on the pulse companion and were over the moon to find the Jon Shaw Foundation were able to fund 80% of this for us. We are beyond grateful for your contribution to the pulse companion, we are able to sleep with a little more ease knowing we will be alerted if Amira’s heart rate was to suddenly increase or decrease.
Thank you”

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

I would like to thankyou so very much for my son’s pillow it’s made such a difference to our peace of mind . We are so very grateful to you guys for making this happen
Thankyou so so much.
Paula
Paula

OUR LIVES WERE TURNED UPSIDE DOWN
‘When our daughter was 8 months old our whole lives were turned upside down by epilepsy. Not only were we negotiating life as first time parents but now we also had this highly dangerous condition to contend with. Fast forward almost 2 years and we have finally now got some reassurance at night with our new Sami3 monitor. We were supported with the purchase of our monitor by Jon Shaw Charity who were absolutely fantastic. They sorted out the purchasing and shipping from America and their communication was absolutely amazing. The application process was easy and supportive. We could not be happier with Jon Shaw Charity and will be fundraising for them in the near future so they can support more families just like ours’.Thank you so much for everything you’ve done.

Gives us the reassurance we need.

Thank you for sending the pillow so quickly. Mabel has it in her cot tonight and gives us the reassurance that we needed.
Thank you ever so much again.

 

Toby

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.

Kim

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.

Phillipa

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. 

Shell

A huge thank you to the Jon Shaw Foundation for the support to get this cutting edge bit of kit.

The device is currently in a training period, needing to record at least 5 seizures with some manual recording in the app following the seizure. Hopefully over time the device will continue to improve and crucially give Rebecca an early warning via her phone that there is a high risk of an imminent seizure, so she has time to make both herself and her 2yr old daughter safe, in addition family will get the same alert as Rebecca to check up on her. The device won’t help for the photosensitive events such as flickering strong sunlight, but any events are still recorded and stored on a cloud server, this could be valuable data for health professionals. 
There are no guarantees here, however if the device eventually works as hoped, it would give Rebecca a huge confidence boost, we will keep you posted.
Clive

We are now able to sleep with a little more ease, thank you.

As you can imagine watching your child have a seizure can be distressing for any parents and finding out Amira had epilepsy has really changed the life we live.
What was even scarier for us was hearing about SUDEP by our epileptic nurse, this is when we knew we needed to purchase a device.
We decided on the pulse companion and were over the moon to find the Jon Shaw Foundation were able to fund 80% of this for us. We are beyond grateful for your contribution to the pulse companion, we are able to sleep with a little more ease knowing we will be alerted if Amira’s heart rate was to suddenly increase or decrease.
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.

 

“Life Changing!”

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.”💜

Sarah

“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.”

Sarah

Oscar is loving his shaking watch

‘I just want to say a massive thank you to the Jon Shaw Foundation. Our 5 year old Oscar has been struggling with increasing frequency of seizures, particularly at night times. We have been getting very little sleep and had huge anxiety about him being in his own room at night. The Jon Shaw Foundation provided us with an epilepsy alert watch which has been such a big relief and Oscar is also going to sleep much easier as he knows we will be there if he has a seizure. We are so grateful and Oscar loves his new ‘shaking watch’ in his words.’
Thanks so much again, it is very much appreciated. 
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