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Life Chez Dee Episode #122: United by the cause

We’ve been out out. Doesn’t happen too often these days. Yes we go out, as a family, with the boys, we go out for lunch or coffees, but rarely do we get dressed up and go out … just the two of us … and we even stayed out all night!

I was both delighted and privileged to be invited to a dinner dance at Derby County Football Club, by Steve Dayman, founder of Meningitis Now. Right from the day Edward died, Steve has been there for us. Steve founded Meningitis Now (or Meningitis Trust as it was then) after losing his own son Spencer to meningitis at just 14 months old.

This September would have been Spencer’s 40th birthday and 40 years since he died on 2nd November 1982. Steve is close to retiring, and desperately wants, before he goes, to raise £300K of vital funds for preventative research Spencer’s name. Spencer’s Legacy Campaign needs this funding, and I know that the money raised tonight will go towards this campaign which means so much personally to Steve. The Edward Dee Fund has recently made a donation of £5,000 to Meningitis Now, and this too has been ringfenced for the research project Spencer’s Legacy Campaign, which also means so much to me personally too. Steve is the face of Meningitis Now, and he has been a constant in the contact and support we have received from the charity, and who I am now proud to call a friend.

We sit down at the table generously given to us by the host of tonight’s event, Dr Sarpreet Mehat, a cousin of Mandy and Ajay Sandhu who lost their 2 year old little boy Arjun to this cruel disease. Three hundred guests came out this evening to support the family, and to support the charity in raising as much money as they could.

On our table, as well as Steve and his lovely wife Gloria, there are others who have lost a child. Let’s also give them a name. Let us now talk about Andrew and Elaine Zographou who lost their 18 year old son George to meningitis. George was a top student and about to go to University. Spending time with his friends at a festival in Cornwall, George became very ill, with meningitis. Paramedics didn't recognise the signs and symptoms of meningitis and sepsis, and didn’t act fast enough. George was taken to a hospital and spent several days on a life support machine before the family were faced with the heart breaking decision to turn this off.

This is one of hundreds of stories I could tell you. Hundreds and hundreds of people missing their sons, daughters, mothers, fathers, brothers, sisters. Each one of those lives lost is a person, with a family, with loved ones grieving, day in, day out.

I tell my story too. I tell people about Edward, and the little firecracker he was. I talk about his energy, enthusiasm, drive, determination and zest for life. I talk about that horrific day almost five years ago when my boy lost his fight with this disease in just a few hours.

We all had our stories, all different, all of us talking of our beautiful children, all of us devastated by our loss, all of us trying to find a way to understand, and a way to live with this unimaginable pain we bear. Each child different, different age, different personality, different circumstances, different strain of the disease, and yet we are all united in our grief and our understanding.

Also on our table was Donna and Jon. Donna’s son Albie had meningitis too. She had been through the trauma of her son being hospitalised with meningococcal septicaemia, but thankfully Albie survived. She thinks she’s one of the lucky ones. She’s struggling with hearing our stories, telling her own, knowing how for others the story has a very different ending. She’s feeling heartbroken as she sits amongst the bereaved parents, listening to their stories of the children they've lost to this disease, and she is feeling so blessed that Albie survived.

Let’s just stop here and read this again, as this actually stopped me in my tracks. Donna is clearly traumatised by the stress and the worry of her child having had meningococcal septicaemia. She saw the rash, she watched as it changed into big purple bruising, as the sepsis took hold, as she tried to find out what was going on as doctors didn’t explain anything to her, as she worried that her child would die or lose all his limbs. Donna fights for help for her son today, but she can’t get help … because even though all the doctors knew he had meningococcal septicaemia, and treated him for this, they didn’t actually take a lumbar puncture, and because this wasn’t done, they don’t know which strain of meningitis he had, and as such she isn’t entitled to help. No firm or exact diagnosis means that her doctors won’t recognise he had meningitis or sepsis, only that this was suspected.

Let us rewind again. Donna feels uncomfortable amongst us, knowing her child survived, knowing our children didn't! This has haunted me. I don’t want her to feel uncomfortable. I don't resent her in any way, shape or form for having a child who has survived meningitis, when this disease took the life of my own child.

I was almost lost for words, which is almost unheard of for me. I told her that as a bereaved mother, all I want is for people to talk about my child. I want Edward’s name to be said as much as if he were still here physically present with me. As a mum you want to talk about your children … all your children… always. That’s what mum’s do. To me, the fact that we were both talking about our children, was the most important thing, and I thanked her for listening to me.

That really is all it takes. It really is that simple. Listen to me, and really hear what I have to say. Talk about my child, tell me the stories and the memories, or at least ask me about him. Tell me things that I don’t know, the good, the bad, the ugly, I don’t care, I just want to hear the stories and memories that others can share with me. Say his name. Say it out loud. Tell his story. Tell others about him. Let his name live on, and never, ever forget him. Because this is all I have. Is this really too much to ask?

The evening was fabulous, the food was delicious, the money raised for charity was phenomenal … a whopping £5001. The evening had an Indian theme, with the food, and indeed the entertainment from the Indian Elvis being the highlight of the night for me.

I came away feeling happy from the night out, feeling the warmth of the love and support for those hosting the event, and for those being supported by the charity. I felt happy to meet up with lovely friends, and comforted that I was amongst those who understood my story, even though this was sadly because they also felt the heartbreak, pain and loss themselves. We were united in grief; we were united in our meningitis experience. But I also felt a little unsettled, perhaps a little strange. Being a bereaved parent I usually deal with others’ awkwardness towards us; child loss and child death being the elephant in the room. People don’t know whether to say anything about Edward, whether about his life, or his death. But tonight, the person who felt awkward was the person who wasn’t a bereaved mother.

Since I have come home, this has permeated my thoughts ... this and just the enormity of what we, and so many others deal with every day, and the destruction and the devastation which meningitis causes.

Meningitis Now’s vision is that no one loses their life to meningitis and is committed to supporting those affected by this disease, helping them to rebuild their lives going forward. I am committed to raising awareness of meningitis and sepsis, to educating the public as to the signs and symptoms to look for, and to engaging with and inspiring communities and people of all ages. I am committed to wanting more research into this disease and the prevention of it, and to the importance of vaccination so that no other family has to experience the death and devastation this disease can cause. I am determined to make something positive come from Edward's death, to breaking the silence over child death and grief, to telling my story and to giving Edward a legacy.

So many have benefitted from the work of, and support of various meningitis and sepsis charities, including myself, and so I will continue all the work I do with a drive and commitment which doesn't wane. I do this for my boy; I will do this for Edward, always.

Should you wish to make a donation in memory of Edward, and to support the charities in raising awareness, supporting those affected by the disease, and funding research, there are a few links below:

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