Bev High

Mum to a son who died aged 19💜 My dad fought in WW2. My son believed in fairness and equality. Time to fight in their memory for what they believed in

[Bev High @bev_high]

@sussex_police

[Haydeano @Haydeano1]

@UKcitizen2021 @sussex_police

[Bev High @bev_high]

@ai_clayton 🤚

[Bev High @bev_high]

@UKcitizen2021 Yes

[Bev High @bev_high]

#together

[Francis Hoar @Francis_Hoar]

#Together

[Bev High @bev_high]

@DriscollLizanne Pride

[Bev High @bev_high]

@sophiepierce Yes Sophie it is....

[Bev High @bev_high]

#OnlineEpilepsyMemorialDay
For my beautiful son Chris Tween forever 19
You have been gone 20 months. A poem I read at your funeral was called Summer Days. It is still that day & always will be. It will be a long sad journey without you & I'll tell you about it when I see you x

[Bev High @bev_high]

@bugsme012 Carry on it should be done. I am trying as well. My son Chris died 19 months ago aged 19 from SUDEP. If a child dies it doesn't mean that all that love & need to care for them ends. That need to love & honour them remains always-it's what we do as parents

[Bev High @bev_high]

@SudepAction @ladbible I am so so sorry. My heart goes out the family. I can feel their pain. I wish I had words that could offer some comfort, but I know from experience there isn't any. Amii is beautiful and I'm so sorry they're walking this path none of us want to be on

[Bev High @bev_high]

@BrainAblaze I agree it should not be done in a way to cause panic, but it should not be spun as the 'rare' narrative creating a false sense of security. Direction to a professional about SUDEP & a personal risk assessment. They still have the chance to be aware of how to minimise their risk

[Bev High @bev_high]

@BrainAblaze No I haven't at the moment, but I will thank you. It is not a good time at the moment as it 19 months tomorrow since Chris my son died from SUDEP and tomorrow would have also been his 21st Birthday 😢

[Bev High @bev_high]

@BrainAblaze Until such time patients/carers are informed of SUDEP & risk assessed with safeguards/medication in place for personal risk with ongoing monitoring then it might be considered 'rare'. I have met so many broken families since my son died who weren't told or were told it was rare

[Bev High @bev_high]

@BrainAblaze I apologise but I tend to get pretty upset when I hear the phrase 'rare' and 'SUDEP' together as it was this narrative from online resources that I researched myself that made my son & I think he wasn't at risk of it. No mention by neurologists or risk assessment carried out.

[Bev High @bev_high]

Until such time patients/carers are informed of SUDEP & risk assessed with safeguards/medication in place for personal risk with ongoing monitoring then it might be considered 'rare'. I have met so many broken families since my son died who weren't told or were told it was rare

[Bev High @bev_high]

@BrainAblaze I apologise but I tend to get pretty upset when I hear the phrase 'rare' and 'SUDEP' together as it was this narrative from online resources that I researched myself that made my son & I think he wasn't at risk of it. No mention by neurologists or risk assessment carried out.

[Bev High @bev_high]

@BrainAblaze That's the figure I was told after my son died of SUDEP. Also told by SUDEP Action that those having uncontrolled seizures for whatever reason such as medication not controlling them, the rate drops to 1 in 150. My son only had 1 maybe 2 seizures a year and it still killed him

[Bev High @bev_high]

@BrainAblaze SUDEP isn't as rare as claimed. Neurologists generally don't tell patients unless obviously very high risk. Most people don't find out about it until they lose a love one. Seems to disproportionately affect young people. Should be ongoing risk assessments/support for all

[Bev High @bev_high]

@sophiepierce I'm so sorry 💜

[Bev High @bev_high]

@Stop_CommonPass My father fought in WW2 to stop the British people having to comply with the words 'Your papers' before going about their daily lives. He would be so upset to see our own government is talking about doing the same thing after so many of them fought & died to give us this liberty.

[Sandie Scrivens @SandieScrivens]

Please R/T to raise awareness of all the young lives lost to #epilepsy every year & to raise awareness of #SUDEP facts so everyone with epilepsy has the knowledge to make choices that can dramatically reduce their own risk #SpeakUp2SaveLives #SUDEPActionDay2020