In Memory of Christopher James Tween

30.03.2000 – 30.08.2019

This is a beautiful but heart breaking piece written by our Secretary Bev about her son Chris, forever 19.

 

By Beverley High

You’re gone’, is the thought I have before I open my eyes, tears stinging the back of my eyelids.  Often before the first light of dawn comes through the curtains.  A quietness pervades where I live that was never there when you were alive. 

Even now nearly 6 years later ‘you’re gone’ is one of the first thoughts I have each and every morning.  6 years since you died Suddenly, Unexpectedly, without warning from SUDEP (Sudden Unexpected Death in Epilepsy).  You went to bed the night after an online gaming session with your mates.  I heard you go into the bathroom in the early hours of the morning of 30th August, gently humming to yourself, to brush your teeth.  I remember thinking it must have been a good D&D session and I’d ask you about it in the morning.  But I never had the chance because somewhere onwards from 1.37am that morning a seizure took your life and took you from us.

Chris you were an ‘old’ and gentle soul.  You always seem far older than your tender years.  We were walking around town one day when you were about 4 years old.  I was holding your hand and I could see you were getting a bit tired so we started to head back to the car.  You announced loudly that you had ‘old legs’ which prompted an elderly lady to smile sweetly at you and say, ‘so have I dear’. 

As you grew up you  despaired of my skills in new technologies and felt it was necessary to speak very slowly when explaining these things to me! I know I drove you to distraction on occasions and made you groan out loud sometimes, and your favourite phrases to me were ‘What is wrong with you?” and “Why are you like this?”.  I always looked to see the expression on you face and I could see a smile dance across your face.

You were a thoughtful, sensitive child, who always wanted to get things right and you would get upset if something went wrong.  As you grew up, this wish to get things right, to get things perfect grew into an obsession.  This obsession was triggered mainly if it was something that really interested you. You never really did things by half once you were invested in something.

During your life you made good friends and were loyal to them.  The friends you made in school remain close to me and I am grateful every day for their connection and ongoing support.

I remember James saying that one time he’d asked you for a few tips to get round a tricky point in a game.  You sent James a 54-page guide!  You were Dungeon Master for many of the D&D games with your friends.  You would spent hours, planning campaigns, writing stories and drawing maps. One of your maps is interred with you at your resting place, along with 14 rosewood D&D dice. 

You were a healthy child, never having more than the usual colds and sniffles.  The same in your teenage years.  This is why it was such a shock when you were diagnosed with epilepsy.  You had your first seizure on 20th January 2016, when you were 15 years old.  I was woken by a howl and rushed into your room to find you having a full-blown seizure.  I remember following the ambulance to the local hospital in the early hours of the morning, down the dark twisty country lanes.  The ambulance drove quite fast and I had my foot down pushing my little car as hard as I could, desperately wanting to keep the ambulance and you in sight.  I felt so sick with worry.

In the hospital I could see you were frightened and scared by what had just happened.  When you got up to move around I offered you my shoulders and put my arm around you. You pulled me tight and I hugged you back. Your next seizure was in September of the same year when you were 16.  This seizure was also a nocturnal tonic clonic.

Several months later you had an appointment at neurology at the local hospital.  We left there with a medication prescription and the website address of the epilepsy society.  You struggled with the side effects of the medication and we quickly discovered that was little to no support in the community for your epilepsy.

When you were seen by the neurologist he prescribed new medication but there was no other support or guidance offered.  When we returned a few months later and discussed what you had experienced with the side effects of medication.  You mentioned that you had stopped the meds as you hadn’t been able to concentrate on your A Levels.   The neurologist then discharged you from the service without any ongoing care or support.  We had been given no information and not one person had informed us of the dangers of epilepsy.

I went on an epilepsy management course run by a local epilepsy charity for parents, as I felt that the information from the healthcare professionals was dismal and severely lacking.  From the time of your first seizure until your last, not one professional ever mentioned that your nocturnal tonic clonic seizures put you at high risk of SUDEP.  Not even the charity who was running the course suggested that I refer back to the neurologist to discuss the risk of SUDEP.    This was particularly unforgiveable as the charity had young people resident onsite with severe epilepsy and other needs.  Sadly these young people did sometimes die from SUDEP on the charity’s premises.

Your taste music was eclectic to say the least, absolutely loving anime and gaming music.  It was the big dramatic music that you loved.  At your funeral you were carried into the chapel to music from your favourite anime, Code Geass. You never knew about contemporary music; it just didn’t interest you.  One time, all your friends were in the car and Queen’s ‘Don’t Stop Me Now’ came on the radio.   You never normally knew the songs other people were listening to, but you did know this one and joined in singing along with gusto,.  This was played at your funeral after James had read his tribute.

This part of James’s speech at your funeral captured you well.  ‘Chris had more than his fair share of downfalls. But it was how he acted in his toughest moments that allowed his considerate nature to shine through. If any of his friends had fallen upon tough times, he was always there to lend thoughtful advice. If we had a problem we didn’t know how to solve, he’d spend hours trying to find a solution. Even if we just needed to vent about something, no matter how important, he was always there to listen, even if he himself was struggling with problems far greater. I always admired his selflessness and resilience in the face of bad times which he didn’t deserve.’  In about 2018 you set up an online group chat for all your mates to join so you all could talk about your problems and try to offer each other support. 

One of the saddest things is you were about to head out into the world to truly know some real independence.  You had just been accepted at University of Sussex (US) to study for a degree in psychology.  All your hard work had paid off.  You knew you had been accepted but you never got to see your acceptance letter as it arrived the Monday after you died.  You never got to see US.  I had arranged for us to travel down to Falmer by train on the 31st August, to visit US and then I’d booked an apartment that overlooked Brighton Marina.  In the Marina was a plethora of your favourite restaurants.  I was going to take you out that evening and treat you to a meal and a beer and we were going to do a little bit of exploring in Brighton.  You never made this trip because SUDEP had taken your life the day before.

Like many of us bereaved by SUDEP I now live without my child (my only child).  Although you were an adult, you will always be my child.  There is such a gaping hole in my heart and life that will never be filled. Not only this I carry the huge weight of your loss.  A loss that I know that time will never dimmish.  Alongside this is the guilt that I didn’t protect you and that I didn’t do more to try and keep you safe from SUDEP. This is because no professional ever told me you were at risk from SUDEP. 

Your loss has left a world where happiness never intrudes and one that is devoid of colour.  Where Christmas no longer exists and days of celebration such as my birthday and Mother’s Day are merely more battle grounds of pain to get through. Your mates and I still celebrate your birthday.  I make the cake you all loved and we sing Happy Birthday to you still, secretly hoping that this will reach you, wherever you are.  We desperately cling onto any of the tiny parts of you that remain.

If there was a higher power I could have gone to and begged to swop, I would have done so without a moment’s hesitation.  I would have argued fervently that you should stay and I should go.  But I didn’t have that power, I wasn’t given that choice. 

Our motto was always ‘you’re not alone and we stand together in this shoulder to shoulder’. I know without a shadow of a doubt you gave me far more than I ever gave you. You were an inspirational young man who enriched my life beyond anything I could have achieved myself. Most of all you were my son, my best friend and someone I loved without measure.  You were and still are the best part of me.  I thank you from the depths of my soul for being my son.  I truly believe there will a day when we will meet again and finally everything will be as it should be.  

For all those mums who cry before dawn……

 

Releasing our “Stop SUDEP Silence” film

This is a film about Sudden Unexpected Death in Epilepsy (SUDEP) including stories of bereaved parents, a person living with epilepsy and parents with children living with epilepsy.

The film also includes interviews with clinicians and information relating to seizure detection devices. The purpose of the film is to raise awareness of SUDEP and stop the silence that surrounds it with the hope of preventing potentially avoidable deaths.

PLEASE BE AWARE THAT SOME VIEWERS MAY FIND THE CONTENT OF THIS FILM DISTRESSING. THE FILM BEGINS WITH A RECORDING OF A 999 EMERGENCY CALL.

Our support of the NICE guidelines for epilepsy

We are proud to inform that the Peter Doody Foundation are not only registered stakeholders and a supporting organisation of the National Institute for Health and Care Excellence (NICE) guidance for Epilepsies in children, young people and adults but also submitted comments at consultation.

Please click on the link below to find out more information and to also see the Consultation summary report (20th December 2023) in the History tab. The consultation comments table begins on page 21 and includes our individual charity comments along with the other named charities below.

https://www.nice.org.uk/guidance/qs211

A list of organisations supporting the NICE guidance, with the Peter Doody Foundation highlighted.

PETER’S 21K PURPLE WALK

Hi there!

Thank you for your interest in our fourth ever purple walk!

Each year since Peter passed we have committed to walking 21 kilometers representing the 21 epilepsy related deaths each week in the UK.

This event is a great opportunity to get together to chat, laugh, meet new people, get out into mother nature, improve physical and mental well being and have fun.

Most importantly it is a chance to raise much needed awareness around epilepsy and SUDEP. It would also be greatly appreciated if anyone would like to raise sponsorship funds for the Peter Doody Foundation or simply donate direct to our just giving page below (or use our donate tab). If you would like a paper sponsorship form posting/emailing, please get in touch.

https://www.justgiving.com/crowdfunding/andre-doody?utm_term=yVwMRZ6Kx

All donations go directly to improving epilepsy care which significantly lacks funding compared with other neurological and long term health conditions.

We will be meeting by the steps at Haworth Church (top of the cobbles), departing at 9am, returning back from Hebden Bridge by bus for well deserved refreshments. This is a stunning landscape route across the moors of Bronte land, through woods and alongside streams.

Please drop us a line by text, email, messenger if you can to give us ideas of numbers joining us.

We really look forward to seeing you there and P.S. It also happens to be our beautiful son Peter’s birthday.

So get your purple on, have fun, make a difference!

Love

Joanne, Andrew, Peter and Harry

Our patron Matt Crooks on living with epilepsy

In 2021 we welcomed professional football player Matt Crooks as our patron.

We first met Matt in September 2021 where he shared with us his journey as someone living with epilepsy and we were able to share with him about Peter and the Peter Doody Foundation.

Football player Matt Crooks with Joanne and Andrew, Peter's parents

Then in October we had a whirlwind of a day meeting with Matt again at Middlesbrough football club training ground for lots of media coverage and to present Matt with his very own Peter Doody Foundation logo sports jacket.

We are beyond thrilled to have Matt on board as an ambassador reiterating our message in normalising epilepsy.

Please take a look at the links below to find out more about Matt and the foundation.

Middlesbrough footballer Matt Crooks shares his experience of living with epilepsy (itv.com)

Boro midfielder Matt Crooks spoke to Mark Drury about epilepsy and the season so far (bbc.com)

Matt Crooks on living with epilepsy, being unconscious for two hours and he wants to try to help save lives (thenorthernecho.co.uk)

Middlesbrough star Matt Crooks on life as a footballer with epilepsy (gazettelive.co.uk)

CROOK’S DREAM Matt Crooks dreams of becoming second epileptic player ever in Premier League but insists ‘I don’t let it define me’ (thesun.co.uk)

Update

Thank you for bearing with us while we have been offline working on (amongst other things), our Stop Sudep Silence campaign.

Regrettably while we continue to work hard behind the scenes to promote the campaign we are still unable to process alarm and monitor applications at this time.

Going offline

On the morning of the 3rd of May 2019 our lives irrevocably changed when we found our son dead in his bed due to SUDEP (Sudden Unexpected Death in Epilepsy).

Shortly afterwards we set up the Foundation with the aim to support other young adults living with epilepsy as well as their family, friends and carers and to raise awareness not only of SUDEP but of the many obstacles and challenges that those living with epilepsy face on a day to day basis and those who care for them also face.

We are proud that to date we have supported many families and individuals with the provision of 30 seizure detection devices alerting loved ones when their child or partner are having potentially life threatening seizures to enable them to call for immediate emergency support. Something Andrew, Harry and I were never given the opportunity to do to safeguard our beloved son and brother Peter.

We have worked with Government both locally and nationally to assist with the improvement of epilepsy care and services with the greatest hope that one day epilepsy as a neurological condition is given parity in terms of research funding and service provision alongside other Neurological conditions.

There are still an estimated 21 epilepsy related deaths every week in the UK, nearly half of which are SUDEP, potentially avoidable deaths with under 20% of clinicians openly discussing SUDEP and epilepsy risks with patients.

We are approaching what will be three years since the charity was founded with the ensuing successful official registration with the Charity Commission in December 2019. During this time myself as Co-founder and Chair have committed myself daily to our foundational aims and goals but as Pete’s mum I now feel I need time away from the day to day running of the charity to grieve.  Andrew, myself and Peter’s brother Harry are also nearing the long awaited Inquest into Peter’s death which has been and still is an extremely difficult and painful process.

At our trustees meeting yesterday we took the decision, along with guidance from the Charity Commission to take The Peter Doody Foundation temporarily ‘off line’ as of the 1st April, not only for the personal reasons referred to above but to re structure and focus on the future of the charity. As of today’s date we will not be undertaking any further alarm applications to enable us to complete our present applications in time for the off line date.

We are also considering our longer term goals in relation to epilepsy research projects particularly relating to SUDEP, its causes and to help prevent deaths. We therefore encourage and ask our dear supporters to continue fundraising for the Peter Doody Foundation, in Peter’s name and as part of his legacy and be assured that although off line the continued funding and donations will be directed specifically to projects that align with our aims and objectives and not disseminated in ways that do not.

As a family, alongside our trustees and friends we will also hopefully be looking to continue to personally fundraise mainly with ‘DoodFest’ and our 21k Purple walk and look forward to seeing you then and there.

In life Peter was so courageous in living day to day with his epilepsy. He was 17 just starting out on his exciting independent journey, moving to Leeds and starting his Degree in music production. Unless you have this cruel condition yourself we can never truly understand the strength it takes to push past seizure after seizure. As his mum, I could only imagine but am forever proud of his strength and what he went on to achieve and of the kind, caring man he became.

With much love and gratitude

Joanne

ALARMS AND MONITORS

As of todays date the 15th February 2022, we have provided 29 people with a seizure detection device. That’s just over one device per month on average since we set up the charity in December 2019!

A huge thank you to all our fundraisers for helping to make this possible.

Joanne Doody Co Founder and Chair

VOLUNTEER OPPORTUNITIES

Hi,

We are looking for two passionate, dynamic, creative people to join us. Could you be our helping hand, shining light………

We are a small upcoming charity that support adults living with epilepsy alongside their family friends and carers.

Epilepsy is one of the most common neurological conditions in the world and there are over 600,000 people in the UK with a known diagnosis of epilepsy. That’s about 1 in 103 people. In every week over 600 people are given an epilepsy diagnosis; that’s 87 each and every day. Shockingly, there are 21 epilepsy-related deaths every week in the UK.

We provide a holistic approach in being there for our amazing and courageous young and older adults through provision of monitor equipment and well-being support. We aim to achieve this by raising awareness, providing support and reducing stigma.

We are based in the Keighley area of Bradford but offer support throughout the UK.

We are presently looking to fill two roles:

  • A social media volunteer who could help with the following:

Preparing a social media strategy and implementing it, regular posts on Facebook, Twitter and Instagram, increasing the followers’ numbers and engagement with the charity. Our aim is to raise awareness and also much needed donations. So if you have social media/digital marketing experience, please apply!

  • Volunteer Secretary To The Board of Trustees

Your role as Secretary to the Board of Trustees will be important in assisting the smooth running of the PDF Board of Trustees to lead strategy and oversight. As Secretary to the Board of Trustees, you will lead the administration for the Board, including preparing and circulating agendas and minutes of Board Meetings, Sub Committees, and the Annual General Meeting. The Secretary also provides advice and support on the governance within the organisation.

We are looking for people who can bring energy, passion and drive to help us achieve our mission and ensure the charity is effectively governed and managed.

We particularly encourage applications from people with disabilities and people from ethnic-minority groups to align with our goal of ensuring representation from the communities and people that we serve. An understanding of people living with epilepsy is desirable but not essential.

If you are interested in applying for these volunteer positions or have any further questions about the role please email info@peterdoodyfoundation.org for an application form or contact Joanne on 078865 629626 for an informal chat.

Closing date: 31st January 2022