Jacob

He was part of a close and loving family who adored him beyond measure. He spent lots of time with us on holidays and socialising. Although he loved going out and seeing friends and family, he was a homebird at heart and loved nothing more than relaxing at home with his comfiest clothes on, playing FIFA on his PS5.

Friends and family would always describe Jacob as an ‘old soul’, he seemed mature beyond his years sometimes. That maturity extended into his music tastes; he played songs that went back to the 1950s sometimes and his knowledge of music was extensive for such a young man. You’d want him on your side at a music quiz! He filled our family home with music and would also love to sing.

His great passion in life though was football; he was an excellent footballer but just loved the game and the teams that he played for. Growing up he’d captained his local team Charvil AFC from age 5 to 17, he made the Reading Academy squad (until a knee injury), he represented his county at both football and rugby and as he got older, he lived for his adult team Boca Berkshire – playing football and meeting up with the lads was the highlight of his week.

One of the things that stood out about Jacob was his empathy for others, he had a gift in understanding people and bringing people together. Many of his friends have reached out after his death to describe how Jacob helped them when others wouldn’t, or how Jacob would always include somebody into a group. He had a natural way of being able to put himself in somebody else’s shoes and always tried to understand people and not judge.

This empathy and understanding of people really helped him in his work. Jacob did well in his GCSE’s gaining several A and A* Levels and obtained a distinction in a sports coaching qualification during his A levels. He decided not to go to university and utilised those coaching skills at a sports coaching company. He worked at two primary schools which then led to one of the primary schools encouraging him to apply for a teaching assistant role. He was brilliant with the children. He was especially good with SEN kids or kids who needed that extra understanding and encouragement for school. The headteacher of 22 years said that she had never seen somebody so young have such a talent for teaching and understanding the needs of the kids. Jacob was planning on following the pathway to become a PE teacher. His death has shocked and saddened the schools that he worked at and crucially they have been raising awareness of SUDEP risk in Jacob’s name. They have several children and staff with epilepsy but were not aware of the risk.

Another trait that really stood out about Jacob was his brilliant sense of humour. He was renowned for his comedy timing, and he would often make people laugh – girlfriends, friends and family all benefited from this and loved him for it. I think it was his sense of humour that got him through the challenges of dealing with epilepsy. This humour coupled with his humility and logical way of looking at the world was how he coped with the condition. When he was diagnosed, he said to me in his matter-of-fact way, “oh Mum, there are a lot of people in the world who are worse off than me”.

He never let his epilepsy define him and lived a normal and full life as much as possible.

Epilepsy background

Jacob had his first seizure in April 2020. I was working at home at the time, and he had been heading towards my office door. I wasn’t aware it was a seizure at the time. I called out for my husband who called an ambulance. Seeing our son so vulnerable was really frightening and from that moment on we, as his parents, lived with the fear of him having another seizure. He went to A&E and had a CT scan, ECG etc and I stayed with him in the hospital overnight.

There was no epilepsy that we know of in the family and no other cause, and the doctors said that it could be a one off. Jacob did not have another seizure until almost a year later. This happened in May 2021 whilst he was in the car heading back from a trip to see family in Yorkshire. Again, we headed to A&E.

In August 2021 he had another seizure. Jacob was due an EEG shortly after this seizure. At this point he was diagnosed with epilepsy and prescribed sodium valproate.

Jacob and I met with the paediatric epilepsy team for the first time in 2021 and during this meeting the neurologist talked about living with epilepsy, potential triggers and medicine adherence. There was no mention of SUDEP during this meeting. There was a conversation about accidental risk through seizures of this type, and I believe the worst-case scenario was discussed but it was very much played down as something highly unlikely to happen. The doctor even mentioned that in some cases people at this age may grow out of it.

Between August 2021 and June 2024 whilst Jacob was on sodium valproate, he was seizure free and had applied for his provisional license and was learning to drive.

This was a big deal for Jacob as he was starting work and wanted to be able to have that independence that he saw some of his peers having. During that time Jacob did all the things that his peers were doing, he socialised, went on his first holiday with friends, had late nights out but there was no seizure activity during those three years.

Jacob’s adherence to taking his epilepsy medication waned somewhat. Even as his parents we had started to think that maybe the epilepsy was something Jacob had grown out of, as mentioned by the doctor previously. In June 2024, Jacob went through a stressful time, something that seemed to be a trigger for his seizures. At the end of June, he had two seizures in one day. The first was not witnessed but Jacob called up to say he thought he’d had one. The second one was witnessed by his dad.

The ambulance was called and paramedics attended to Jacob. He was taken to A&E for further checks where he had a CT scan and ECG. All results came back fine so the doctor discussed medicine adherence and triggers and Jacob came home with us after a couple of hours.

Transitioning of medication

Those breakthrough seizures prompted a call with the epilepsy team and his new adult epilepsy specialist nurse. During this conversation the epilepsy specialist discussed transitioning onto new medication because of the guidelines around sodium valproate and potential impacts to fertility. Jacob was then sent a letter and details about transitioning off sodium valproate and onto lamotrigine. As his parents we felt that the risk to infertility at that time, when Jacob was 19, was not a priority but him being seizure free, on a medication that worked for him, was.

The transition was very complicated and meant we needed to support Jacob by halving and quartering the tablets to ensure the correct amounts were used as advised. There is no way that a 19-year-old young man could have understood and managed this on his own.

Jacob had an appointment with his epilepsy nurse in December 2024 and his general wellbeing, transition progress, adherence to medication and I believe (according to the follow up letter he received) SUDEP were discussed. I don’t believe that Jacob ever had a conversation about his own individual risk of SUDEP. He was very open with us and after the conversation didn’t have any concerns. The SUDEP conversation did not register enough with Jacob for him to even mention this to us. I only saw the word SUDEP on the follow-up letter.

I had researched SUDEP when Jacob was first diagnosed with epilepsy but had not thought Jacob was at risk. I had always thought that ‘uncontrolled seizures’ meant epilepsy patients who had several seizures per day/week/month and Jacob didn’t fall into this category with his seizure patterns.

Jacob finally fully transitioned from sodium valproate in Feb 2025. This had been a difficult transition, he had lost quite a bit of weight, had increased sleep disruptions and his hair had thinned. We believe this may have been due to side effects of the medication, but Jacob persevered with the plan and advice from his epilepsy specialist team.

Seizure activity prior to his death

In May 2025, Jacob’s work called to say they believed he’d had a seizure (although not witnessed, the headmistress of the school found Jacob in the corridor on the floor). Leading up to this Jacob had not been sleeping well and had just started a new position as a teaching assistant so we put this down to stress.

A couple of weeks later he woke up and had been sick. He wasn’t sure whether he’d had a seizure. As Jacob had never experienced a seizure in his sleep, we weren’t sure if this was a seizure, so he didn’t contact the epilepsy team.

In June 2025 Jacob had been having a sleep after work and had called to say that he thought he may have had a seizure. He then went on to have two more seizures in the space of seven hours which was highly unusual for Jacob. I was with him during his third seizure, and he seemed to stop breathing for a couple of seconds which I’d never witnessed before. I tried to rouse him and call his name and get him into the recovery position. His dad called 999 and we made it clear that this was very unusual seizure activity. Jacob seemed to take longer to come round from this seizure and wasn’t making a lot of sense. The operator seemed OK with the fact that he could respond in some way to our questions even though he was extremely disoriented and confused.

The next day Jacob went to the GP with his dad. The GP focussed on the shoulder injury that Jacob had sustained during the second seizure and advised that he could go to A&E to get it looked at. In the three contacts we had with medical professionals no one connected the dots or raised concerns over the cluster seizures and unusual seizure activity which we found out later is included in NICE Guidelines.

There was no additional seizure activity before the fatal seizure on 29^th July.

There is nothing that can prepare you for finding your child, your heart, the greatest love of your life not breathing and lifeless. I found Jacob slumped at the side of his bed. He was going to be lead coach at a kids’ football camp that day and wanted to make sure he was up on time so asked me to wake him at 7:30. It took me a second to register what I was seeing and I screamed at the top of my voice down to my husband as I got Jacob onto his back. When my husband got to me, I called 999 whilst he started CPR. The emergency operator sent me to get a defibrillator whilst my husband continued CPR as I ran down the stairs to the car. That image will stay with me forever, seeing my distraught husband over his beloved son’s body trying to save his life.

I’m not sure how I was able to drive the car that day as I was producing these unearthly howls that seemed to come from the depths of my soul, pleading for my son to be OK.

The first responder jumped out of the ambulance and followed me up the stairs. He took over from my husband in giving CPR and gave Jacob some oxygen. A critical care team arrived by helicopter and Jacob was administered adrenaline. They continued CPR, eventually getting a pulse around 07:50. The emergency care team said that getting Jacob’s heart restarted was largely down to the quality CPR administered by my husband. Jacob was placed into an induced coma and transferred to the ICU at the Royal Berkshire Hospital.

The relief we felt at Jacob’s heart being restarted was short lived. The ICU team did their best to save Jacob over six days, but it soon became clear the extent of the brain damage he had, due to the lack of oxygen whilst he was in cardiac arrest. A number of tests and scans showed extensive damage and no brain activity.

We were told to prepare for the worst so if any friends and family wanted to visit they should. Over the next few days Jacob’s family and friends came from far and wide to say goodbye to him. So many people came, his loving family, friends, girlfriends, at one point his whole football team came. I don’t think anyone could believe what was happening to our beautiful Jacob, least of all, us.

Jacob passed on 3^rd August 2025. I still can’t find the words to describe the utter devastation and heartbreak of that day, so I won’t try here. No parent should ever have to go through this.

Jacob had decided to be an organ donor when filling out his driving license application again with his matter-of-fact way of looking at the world. He said, “well I’m not going to need them am I, and someone else will!” He saved five lives that day including a heart transplant patient, which we’re told is very rare. Jacob is a true hero!

I’m not sure how we have survived the days and months that followed. Further tragedy was to befall our family two months later with the tragic passing of our beautiful daughter (my stepdaughter) Becca at age 33. This wasn’t epilepsy related so I won’t go into details here, but our family is devastated. The small comfort we had was knowing they would be together as Jacob and Becca adored each other. I was starting to think that our life couldn’t be real.

Our family and friends rallied round us, propping us up as best they could. Nobody knew what to say, how could you? There are simply no words to cover it. We are so grateful to them though for trying and always being there for us.

SUDEP Action was also there for us from the very beginning, our initial chats with Pierce who was so kind really helped us. A whole world of information had opened up to us around SUDEP that we only wished we had known about before.

We shared some concerns with the coroners’ office as we felt that there were missed opportunities in Jacob’s care leading up to his death and with the transition from sodium valproate. The inquest happened 10 months after his death. Leading up to the inquest, and during it, we were lucky enough to be supported by SUDEP Action. Julia our caseworker helped us to put our concerns to the coroner and held our hand through the inquest on the day which was incredibly hard.

The inquest into Jacob’s death

Our concerns were around Jacob’s risk factor for SUDEP not being discussed and reviewed and the withdrawal from sodium valproate, a highly effective medication for Jacob because he was seizure free on this medication for three years. We felt there was a lack of monitoring during the transition of medications and that the cluster seizures Jacob experienced leading up to his death had not been treated as a medical emergency.

His dad and I needed to understand what had happened to Jacob for ourselves and for others too. We didn’t want any other parent to have to go through what we are going through. We didn’t want anyone to lose the opportunity to keep themselves safe from SUDEP.  If something could be learned from Jacob’s experience to help others in future, that was, and is, so important to us.  

We didn’t get all the outcomes we were hoping for, but some improvements were called out around how epilepsy patients would be reviewed by the local GP practice – and the epilepsy specialist team said they were implementing the SUDEP & Seizure Safety Checklist for patient reviews.

In my view this is not nearly enough. We still don’t understand SUDEP and what causes it. More research is needed, more conversations around SUDEP risk must be had with epilepsy patients and there needs to be better links between GPs, epilepsy specialist teams and other care providers and the emergency services. Epilepsy is a cliff edge condition and too many of our young people are dying from it.

Jacob’s family and friends have raised over £30,000 for SUDEP Action over the last 14 months in Jacob’s name and we will continue to do more, to help this small but brilliant charity. We will also continue to raise awareness of SUDEP.

With SUDEP Action’s help we wrote to the health minister to support the call for
an urgent suspension of the inclusion of men and boys in the valproate framework and that a form of wording is chosen for medication leaflets that is evidence based and balanced. We want the government to work meaningfully with SUDEP Action on the prevention of future deaths.

Unfortunately, we are not alone and there are many people out there who are grieving a loved one linked to an epilepsy-related death. My heart goes out to you all. I understand what you are carrying.

Grief like this is not something you get over. Mine and my husband’s hearts are truly broken. All of Jacob’s family and friends have been impacted by his death.

For Jacob, I keep finding the strength to put one foot in front of the other, but I know I’ll never be truly happy again until we are reunited.

Our beautiful boy is a ‘light that will never go out’ and until we meet again, he will light our path.

Tania – Jacob’s Mum