I lost my son unexpectedly in Sept 2023. We’ve since found out he had myocarditis - he seemed to have a bit of a cold, then the next day he was gone. It’s just so shocking how suddenly everything changed!
I can’t find the words to describe how devastated and empty I feel. Some days I get through ok (I have 2 other boys to run around after!) and other days, the utter sadness of it affects me so deeply. Today was a hard day, for no reason I could tell - it just exhausted me.
My heart breaks for you @YoYo78
I’m so sorry about the sudden loss of your dear son. Sending love and a virtual hug.
I just wanted you to know I saw your message and am thinking about you.
Do you have enough support? You may also benefit from counselling if you have PTSD from the shock.
I can’t imagine what you’re going through. Take care. X
@RobBeat08 Thanks so much for your message.
We’re lucky that we have lots of family support nearby and the boys have accessed a local charity to help them deal with everything. My husband and I aren’t really sure what would help but we’ll probably contact one of the organisations our GP suggested.
Take care, thanks again
I am so sorry for the loss of your son. I too can relate with regards to how fast things can happen.
We lost our two year old, Leo.
He was diagnosed with a brain tumour on January 15th 2024 and he passed away 21st January 2024. His funeral was on 8th February 2024. We have pictures and videos of him running around and being his usual cheeky self on the 5th Jan. Everything happened so fast. His brain tumour was very aggressive and fast growing. He had a biopsy but the results didnt come through until 31st January.
We found out it was a Group 3 Medullablastoma with MYC amplification and widespread. It had already spread to other parts of his brain and down his spine. We were told that when signs and symptoms happen, its already too late. He was too young for radiotherapy and too weak and poorly for Chemotherapy. The Chemo would have killed him.
Leo was our only child. Now all we have is his urn. Its not fair.
I am so so deeply sorry for your loss.
Its a pain that just cannot be put into words at all.
I just wanted to reach out and let you know that you’re not alone. Even though it feels like it at times.
We do not know each other but as a fellow Angel Baby Mummy, im here to talk if you need someone to listen.
@LeosLegacy , I’m so sorry that you’ve suffered the loss of your little boy, Leo. Thanks so much for reaching out and sending a message.
I hope you are managing to cope as best you can and that you’ve had some support in the weeks since Leo’s funeral.
I felt more worse once we’d got through Aaron’s funeral service and burial of his ashes. After our family and friends went home, all I had to focus on afterwards was the fact that Aaron wasn’t here with us any more.
It’s definitely not fair that we are in this situation. I can’t even describe how I feel most days - I just have this constant ache that something is very wrong.
Aaron was born 10 weeks early, weighing less than 1kg and we thought we’d lose him then. He pulled through all of that and was starting to do really well - just another loud, happy 2yr old. We thought our worries were behind us but then he was gone, to something no-one could have predicted. There was barely a thing wrong with him the day before he died, we sat and played and read books and ate crisps together like any normal Saturday.
I’m happy to chat too, if you feel you need to talk to someone who is going through the same thing as you.
Take care
Hi there,
My daughter died of Myocarditis too, aged 15 months. Like your son, she had a cold & suddenly deteriorated and was gone.
I had taken her to A & E, the doctors and then A & E again over 3 days as the cold she had just wasn’t shifting, she wasn’t getting better and I knew something wasn’t right.
She went into cardiac arrest but after 90 minutes of CPR, she could not be saved.
I have not come across many who have had the same thing. Sending love & strength to you. X
@Twirl22 I’m so sorry for the loss of your daughter. I hope you and your family are managing to cope.
Our stories are sadly really similar. Aaron got coughs/colds all the time and this last one wasn’t anywhere near as serious as some of the others he’d had. We had him at nursery and even a hospital appointment in the days before and no-one noticed anything out of the ordinary!
It all happened so quickly and by the time the ambulance arrived. I think it was already too late. It is such a cruel condition, rare anyway and most people don’t even know they have it! The Consultant in A&E struggled to explain what could cause such a dramatic deterioration 
Take care and thanks for taking the time to respond to my post 
I am so sorry for your loss too, I was having a tough time last night & decided to seek support on here. I couldn’t believe that your story was so similar. I also have just noticed that we lost Olivia only a month later after you lost your Aaron.
Unfortunately we had the wrong diagnosis the morning that she died & there were missed opportunities to help her. So that is an extra layer of grief.
Like your son, the cold was not the worse one by any means.
I find the life we lead now is always running alongside the “should have been” life.
We are coping as best as we can, raising money for charities & keeping Olivia’s memory alive. Thankfully we have amazing friends and family, but no one truly understands the pain other than those who have gone through this.
I’m so sorry this happened to your beautiful son. Our children deserved so much more.
Happy to talk whenever, thank you for your original post. Xx
I’m glad you have support from family and friends and have something to focus on that helps you to remember Olivia.
As you’ve said, there aren’t many stories exactly like ours, so I hope knowing you are not alone in what you are going through is helping too.
I’m sorry you have the added sadness of Olivia being misdiagnosed at the time. I know exactly what you mean about the lives we and our children should be living now - we celebrated Aaron’s birthday without him for the first time a few months ago and it made me think about all the things we’ll never get to do together.
Unfortunately some days seem harder than others - often for no reason at all - so I’m happy to chat when you need to.