What a day we had ! Last weekend 15 of us from @gemini_wealth took part in the @suttonfunrun to raise money for @PANSPANDASUK - so far we’ve raised over £5,600 🫶. The kindness and generosity of everyone who took part and everyone who has donated are incredible, thank you all so much ❤️
It’s now 6 years and 3 months since I’ve seen my Son because of the devastating impact on him from PANS PANDAS. However, he’s saying he’s ready to meet up again this week after his last exam on Wednesday. I hope he can and feel so happy that he’s making great progress after having his life on pause for so long.
I love you Son ❤️
Another day, another happy update ⭐ today my Boy did his Maths GCSE. Told his Mom it was hard which is to be expected after he’s missed the whole of high school.
But here’s the best bit. He had to go into his form tutor class for 30 mins before the exam. He was shocked that everyone knew who he was (he’s never attended a high school lesson before) and was happy to see him.
He asked his tutor how come they all knew him….. he replied “I’ve read your name out on the register every day for 5 years and you’ve never been here, so they all know who you are and are happy you’ve made it in”.
How good is that? Made me cry anyway. I’m so grateful they read his name out everyday and didn’t forget him 🙏
I love you Son and always proud to be your Dad ❤️
My Son has been into School today and sat his GCSE English exam. He wore his high school uniform for the first time and sat in a hall with about 100 other kids.
The strength and bravery that must’ve taken has me in awe. He’s not done a day in school since Feb 2020 and some of his primary school friends were in the room.
He’s done some online tutoring 3 times a week for 6 months but before that did no formal education action for over 5 years.
What a boy, love you mate ❤️
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 https://t.co/RwFmUn0k6s
My Boy will set foot inside a school today for the first time since Feb 2020. I didn’t think we would see this day but his bravery is unimaginable. It’s just a quick visit ahead of him sitting some exams next week, but it’s everything. I love you mate ❤️
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 ❤️
Happy Easter people. I sent my boy a 2 line email , it was his birthday and I didn’t plan to, but emotion took over. I’m like a kid checking to see if his crush replied to my message ! Nothing yet but I have hope that this beautiful boy could be back in my life soon. Hug your loved ones guys, 6 years since I hugged by beautiful boy ❤️💔
@AndyGoode10 You already know this Andy but you’re just being provocative and providing rage bait nonsense. Go do something constructive cos this is weak and poor
Hope everyone can see this? I did this work last year weeding & painting. Comment if you can I am worried my account was hacked or disabled. I've had X flagging messages here. My follow counts have gone. Not sure what to do
Goodbye dear friend - thanks for all those years - we had some great fun. 4 kids from Aston- who’d have thought, eh?
So glad we got to do it one last time, back in Aston.
Love you.
A final piece of advice from Holly Butcher - written the day before she passed away from cancer at just 27:
“It’s a strange thing knowing you’re going to die young.
At 26, I thought I had time…
To fall in love.
Start a family.
Grow old.
But cancer doesn’t care about plans.
Now, I understand how fragile life really is. Every single day is a gift, not a guarantee.
I’m not writing this to scare you. I’m writing to remind you: really live.
Stop stressing over little things. Be kind to your body- move it, nourish it, stop criticizing it. One day you’ll wish you had appreciated it.
Go outside.
Look at the sky.
Feel the sun.
Just be.
Spend less time chasing “stuff” - more time making memories. Don’t skip moments with people you love.
Laugh more.
Write a note.
Tell someone you love them.
Complain less.
Give more.
Helping others brings more joy than anything you can buy.
Be present.
Put your phone down.
Show up - really show up.
You don’t need to have it all figured out. You don’t need a perfect body, or a perfect life.
Just follow what makes your heart light up. Say no to what drains you. Make changes when you need to.
And please - donate blood. I wouldn’t have had that extra year without it. And that year gave me memories I’ll hold close… forever.
Thank you for reading this.
Live your life well.
And maybe… we’ll meet again someday.”
Holly 🩷
Repost & share Holly’s important advice. ❤️
Happy Sunday all, we’ve had some lovely positive developments this week.
My Boy has asked for a phone having not used one since he got ill. He’s also picked out some clothes “for when he starts to go out”.
Yesterday he asked for some books, again a post PANS PANDAS onset first !
Today the books got delivered to his Moms but left at the gate, so he put on t-shirt, shorts and trainers to fetch them. He’s not worn anything on his feet for 5 years and not voluntarily left the house in the same time.
It was about a 4 metre round trip but it’s a huge win. Making me smile.
He’s now lost 5 years of his life to PP but it doesn’t have to be this way, early intervention means lost childhoods are avoided. But, this needs more medical professionals to be aware. You can help me do this by sharing my messages or sponsoring me on the link below for our charity run. We are closing in on £4k raised so far and the run is one week away.
So many of you, who I’ve never met in real life, have already generously sponsored and honestly I can’t thank you all enough ❤️❤️
Always proud of you Son ❤️❤️
You can help raise money by donating online #JustGiving https://t.co/YwzCrAt2kE
We lost another legend yesterday.
Pat Burns was in my multiple on 2nd Jan 2011 when he initiated an IED and lost his right leg below the knee. On leaving the army he married, had two beautiful children and worked at a school for kids with social issues.
His wounds never healed properly and he was constantly fighting infection. On Weds he collapsed and died from suspected sepsis. A beautiful big man with the heart of a lion, awesome paratrooper, and much loved son, father, brother and friend.
Today the world is a much darker place… I will see you again in the FRV brother.
RIP Pat Burns, mighty C of Gungey 3. 🙏💔🇬🇧🟩🆙 @supportourparas@TheParachuteReg