Karen M

When I think about being a Dad, the 3 words that most often come to mind are protect, provide and support. I’ve not had contact with my Son now for over 6 years, for the first 5 years he couldn’t even ask for anything or accept gifts, even birthdays and Christmas. I’ve been able to provide, but from a distance and only in a general way. Every day without contact I’ve felt lost in not being able to even do the basics, or even know what his needs are. He changed overnight a few months after Scarlett Fever and went from a perfect child to one consumed by fear and OCD, he didn’t wash or dress for 5 years. He saw nobody apart from those in his house, which he was unable to leave in all that time. 6 years on and he’s doing much better, he will return to school to sit some GCSE exams this week. He’s not been to school since Feb 2020. He went to Berlin to explore the City on his own for 3 weeks. His strength and bravery after so long are humbling. He was stuck down by PANS PANDAS for so long but never complains and is just focussed on moving forward. I’m still yet to have contact with him but I’m confident it will happen soon. There are many other children and their families struggling like this and @PANSPANDASUK have been such a lifeline that I can never thank them enough. Last year a team of us from @gemini_wealth raised £7,000 and we’re trying to grow that this year. 17 of my amazing friends and colleagues are running to raise money for PANS PANDAS UK on 31st May. If you can spare something it would be very much appreciated. If not, just a like or retweet would be amazing thank you. 🙏 I love you Son and always proud of you ❤️ MARK is fundraising for PANS PANDAS UK. Check out their @JustGiving page and please donate if you can. Thank you! #JustGiving justgiving.com/page/mark-thom…

@notestomyboy This is so heartwarming and gives so much hope to others who can not see their way out of this long, long, pitch black tunnel. "Even the darkest night will end and the sun will rise" - Victor Hugo.

It’s feels like a slow moving miracle ❤️ yesterday my Boy was able to go see his maternal Grandparents traveling on the train. He was a little nervous but chatty and confident when he got there. Plans are in place for a partial return to school soon, in class with other children. There will be children in there he’s not seen since Primary school. He’s ready to do this and taking it in his stride. His strength and bravery in facing all of after 6 years of illness and almost total isolation cannot be overstated. I think I will get to see him soon, he’s talking about a short walk together in the park to break the ice. After 6 years of separation I have missed him so much it physically hurts. Love you Son and here’s to hope and love ❤️

@IR88K 🤣

#ArtemisII 🥹

@notestomyboy @EmmaH1289 More than anything, I hope that one day soon. . .he can.🫶

@EmmaH1289 He can’t. Simple as that. Blew my mind for the first 12 months with “what have I done” “why is he being like this” along with a hundred other obvious questions before I found peace with simply he can’t. Maybe soon he can ?🤞

My boy is home and happy. He spend 3 weeks in a foreign city alone and has thrived. I find it hard to comprehend how a child who has been so ill that he couldn’t leave the house for 5 years can achieve this but I’m so proud of him. Having thought about it from every angle, my take is that he’s done this to show us all that he’s no longer a child and no longer ill. It’s certainly changed my mindset about how I will be with him when we meet up. It’s been 6 years since I’ve seen him due to the hell of #PANS #PANDAS he has been through. I am more hopeful than ever that he will be able to see me again. He has a big birthday coming up, it’s tough as this might be the 7th consecutive birthday I’ve not been able to see him. I miss you mate, I love you and I am so proud. ❤️

Vito Coppola. For all that's good, kind, genuine, full of heart, in this world.

@notestomyboy He's still in there and there is still so much hope that he'll come back to you. Even in those words, there is no doubting that he knows how you cherish and love him. The rest is how PP presents itself. Holding hope for you and your boy x

“Stop sending me emails” 4 words that made me numb this week. The only contact I’ve had from my Son in 5 years. I had his email address a couple of months ago and have sent him 3 or 4 emails in that time with photos of places he might find interesting. I didn’t get any reply and didn’t expect one, but that changed this week when I received the above from him. It was really hard to read this and it’s taken me a few days to come to terms with. I haven’t replied and have come to the view that he is still significantly impacted by the brain inflammation which caused his PANS PANDAS breakdown in Feb 2020. I am fine and will keep doing all I can to support him from a distance. He’s still planning a solo trip and says he will be back to normal when he’s back. All I can do is stay positive and keep hoping. A photo from one of our boys trips a few years ago. I love you mate ❤️

@nigelandfamily . . .and she needs to remember how this began!

@shainie19 no,she's highlighting that this has to stop

@Dawn_French Where is your Israeli flag and yellow ribbon to sit next to your Palestinian flag?

@nigelandfamily @Dawn_French @marksandspencer @FalmouthUni You've missed the point. This is not just criticism of Israel. This is a public figure mocking the slaughter, rape, murdering of innocent people. I would feel the same if she'd mocked the slaughter of innocent Palestinians or any other innocents. That's the point.

@Shainie19 @Dawn_French @marksandspencer @FalmouthUni Why is it that when anyone criticises Israel the almost unanimous response of the pro Israeli crowd is we have to cancel that person and destroy their livelihood?

@twin_to_apollo @Dawn_French @marksandspencer @FalmouthUni Go and take a look at the responses to what she has done. I think my friend, you'll see that there are more than 3 people who see what the truth is here. I have no need to hide my face in shame. Quite the opposite. Wait and see.

@Shainie19 @Dawn_French @marksandspencer @FalmouthUni Ha Ha @Shainie19 3 people. Yes exactly THREE at this point in time across the world agree with ur inhumanity. U know what? The world has woken up to the truth of a new brand of fascism, so go hide ur face in shame.

@personanon57 @riddler791 @Dawn_French @FalmouthUni need to drop her as their Chancellor with immediate effect.

@Dawn_French We are doing a charity walk in Cornwall on the 1-3 April for foodbanks to show commitment to service people, veterans and our communities. A message of support, retweet, or shout out would be phenomenal to raise awareness even further justgiving.com/page/peopleand…

@Dawn_French This is my husband’s cousin Tsachi who was kidnapped from his home on October 7 by Hamas and was returned to us in a coffin. Next to him is his 18 year old daughter Ma’ayan who was shot in the head just before he was taken. They deserve more than your smug dismissal.

An open letter to @Dawn_French Dear Dawn, I have watched the video that you posted about the war between Hamas and Israel. You are entitled to your view of course and I am sympathetic to the plight of ordinary Gazans who did not participate or endorse the terrorist attacks of October 7. Yet your video describing the Hamas massacre as a “bad thing” in a mocking tone appears to minimise or dismiss the severity and horror inflicted that terrible day. My husband’s cousin Tsachi Idan was at home asleep when the terrorists invaded his kibbutz. The family hid in the safe room but there was no lock so he held it shut. The terrorists forced, at gunpoint, a local teenager to try to lure them out. When that did not work they fired at head height at the door. Tsachi’s eldest daughter Ma’ayan was helping her father protect the family. The bullet hit her in the head and she died instantly. We know every detail of this horror because Hamas were live streaming and recording. They then held the family inside their home for five hours and it became their base of operations while they murdered and kidnapped dozens of civilians on the kibbutz. They marched Tsachi to Gaza covered in his child’s blood. There he was held hostage for many months until at some point he was killed. His body was returned in February. We will never recover from this trauma. Never. The entire universe has changed. There are still 56 more hostages in Gaza and 56 more families suffering this unfathomable torture. To describe this so glibly adds to a deep well of pain. Since then at home in Brighton & Hove we have witnessed the celebration of the murder of our family, seen antisemitism triple, seen Hamas supported. We have been attacked and harassed. The world has become a hostile place. I do hope that you can find empathy in your heart for us and the many thousands of people who were murdered, raped, maimed and kidnapped that day. For them and their families and friends. I hope too that you will delete your insulting video and be more respectful and kind in further expressions on this conflict. In hope.

@Dawn_French @FalmouthUni you need to drop @Dawn_French from her position as Falmouth University Chancellor. Her mocking, sneering, diminishing of the atrocious events on October 7th reflect very badly on your reputation!

@Dawn_French Mocking the atrocities of October 7th. Utterly disgusting . Ignorant. If you'd said this a few weeks ago, I would've walked out of the Cathedral when you walked in for that very special memorial. I sat right behind you. Shame on you @Dawn_French . 👎

A child changes - sometimes overnight, sometimes over weeks. Panics in the car. Refuses food. Can’t sleep. Clings to you all day. Terrified of noises. Wetting themselves. Obsessively tapping or blinking. Parents are told:
“It’s autism.” “It’s FND.”
“It’s sensory.”
“It’s behavioural.”
“It’s anxiety.”
“It’s your parenting.” No MRI. No EEG. No bloods. No immune workup. Just a label. A leaflet. A waiting list. No one asks: Why did this start after strep? After a virus? After antibiotics? After mould exposure? After a tick bite? No one asks: What changed in the brain? This is how PANS, PANDAS, encephalitis, metabolic disorders, and autoimmunity get missed. They needed medical investigation.
They got a behaviour chart. #Neuroinflammation #functionalmedicine

2026 guidelines for #PansPandasHour will reshape paediatric care. The story starts now—with how prepared (or not) the NHS will be. Media, take note: panspandasuk.org/post/work-cont… @claudiahammond @PhilipSimeITV @seanjcoughlan @katyballs @JamesTGallagher @Matt_Maddren @aoconnell