Sepsis and Me

I have a very strange relationship with sepsis. Ultimately it is what caused the most devastating loss in our family. It is what robbed my first-born child of his life. I didn’t even know what it was and hadn’t even heard of it before William’s death certificate was presented to me. Now I know so much about it that it seems impossible that there was ever a time when I didn’t know that it existed or that it was an integral part of my life.

You would think that because sepsis stole the life my of one-year old baby that I would never want to let the word roll off my tongue again but it is what consumes my life on an almost daily basis. It is something that I cannot let go of. It is something that I have to speak about and it is always on my mind.

I work for the UK Sepsis Trust but to me it doesn’t feel like a job. If I didn’t work for them I would campaign, I would blog, I would educate the public and health professionals about sepsis and the reality of what it can do. Sepsis is an integral part of my life that is unavoidable, perhaps not as unavoidable as William’s death. William couldn’t avoid it and neither can I.

When I talk to health professionals about William’s death, about those horrifying moments that I found my lifeless child in his cot, rigor mortis having taken over his fragile little body, the words catch in my throat. Reliving it, retelling it and recounting every single painful moment is almost like a punishment, dipping myself back in to that moment. I invest so much emotionally when I talk. But it is not something that I can escape from. I could of course choose not to talk about it. I could choose not to revisit, but these thoughts and those memories live in my mind, they are part of my make-up. As much as William’s life is made up of the most wonderful memories, William’s death happened too. It is part of my life and it is what has redefined me.

I am always asked when I arrive at a talk or conference whether I get nervous. I don’t, not really. I don’t have butterflies in my stomach, I don’t have sweaty palms and I don’t feel any sense of anxiety. After all, the subject I talk about is my life, I can’t get it wrong. It’s not a test and no one is judging me. Something that every parent wants to do is talk about their children. Their pride and joy. I cannot talk about William’s latest achievements or what he’s up to. I have finite memories that I can recall, there will be no more memories to make. So, in order to talk about William, I talk about his death, because that is also part of his life.

Sometimes I get messages from people, saying that because of a talk that I’ve delivered, or a blog I’ve written or a video I’ve shared that they heeded my advice and due to that their loved one was diagnosed and treated successfully for sepsis. This warms my heart and for every story, every child, every life it still gives me goose bumps and it still makes me cry. I cannot help but feel that I wish there had been a ‘me’ several years ago when William was poorly.

I know that whatever I do William lives on in the hearts of the lives that he’s saved. I cannot bring him back, if I could, I would. I have not accepted William’s death, how can you accept something that is unacceptable, but what I have done is made peace with myself that one day I will be with him again. I don’t know how, I don’t know when, but I know that it is but one heartbeat and one breath away.

I haven’t just seen the devastation that happens when sepsis enters one’s life, I live it, I breathe it. It is what tore my family apart, it crept in to my son’s life and it was what stopped that golden heart from beating. I will not forgive it, I will not give in to it. I have embraced it, I implore it, I share it, sepsis forms every part of my way of being William’s mum. If I can help just one family from enduring the pain that we live in, then I’ll keep sharing, I’ll keep talking, I’ll keep telling sepsis that you might have won the battle but you most certainly have not won the war.

Love prevails. Always.


www.justgiving.com/williamoscarmead

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William’s Birthday Fundraiser

So, William’s birthday.

I’m going to write this blog purely about you, and how you have all helped us as a family to raise nearly £10,000 for the UK Sepsis Trust for William’s birthday.

The final figure hasn’t been totalled up yet, as we still have donations coming in and payments made for auction lots that were won. But as a rough breakdown, we raised over £3,500 via William’s Just Giving page (including giftaid), for those who couldn’t attend and bought balloons and raffle tickets. The online auction raised over £950, the auction at the event raised £400. Donations on the day for raffle tickets, balloons and donations exceeded £1,000. Worldwide Financial Planning (where I work) have agreed to match fund £1,000 and we are currently waiting for Santander Bank to match fund, the amount has yet to be confirmed. A cake sale at Standard Life raised over £400 with Standard Life matching the amount raised. There was a balloon release held in Spain where my family live, this raised over €300.

There are some events still taking place, these funds will be added to William’s Just Giving page. With a target of £10,000 I think with future fund-raising we might consider a new target!!

There are so many people that we need to thank, those that donated raffle and auction prizes. Their time, their help and most of all the support. Not just from family and friends but the wider community, including all around the world. There have been balloons sent to heaven for William from the States, South Africa, all across Europe including the UK, Australia, New Zealand, and Hong Kong. I am absolutely certain that William caught every single one.

Given the awful weather conditions, lots of people turned up to help us celebrate William’s birthday, it was extremely windy and rainy, typical UK style, but nevertheless, people put their wellies, hats, gloves and coats on and mucked in to help the family through what was an extremely emotionally charged day. At one point half of the balloons blew away, when a gust of wind was determined to steal our gazebo. But that didn’t spoil anything, we blew the reserve balloons up and let them go instead. As Paul, helped by all the children, let the balloons go from a big net, the Sun broke through the clouds, a perfect, tranquil and beautiful moment, I’m sure William knew. Our little two-year old was watching over us.
I would also like to say a very special thank you to a lady in Canada (I haven’t been specific with location from where they were set free to allow the students anonymity). Lydia along with her students raised and set free beautiful Monarch butterflies in William’s honor. They did this a couple of months ago, however, I thought it would be lovely to include these photos with William’s balloons. These elegant butterflies, one male and one female are currently making their way to Mexico.  Their wonderful teacher explained about William and his story and when they set the butterflies free, they all said a prayer for our little boy.

We are fast approaching one whole year without William, but that is an entirely different blog altogether. I want to sincerely thank everyone who has supported us, and restored our faith in humanity. I will shortly be putting up a gallery on my blog of all the photo’s we have received, so if you have any, please send them to me. If you are able to help us reach our £10,000 target, you can by visiting William’s Just Giving page by clicking this link I’m sorry that I might not have thanked everyone personally but we love you all xxxx

William’s Charity Auction

Givergy

So everyone, William’s birthday is in two days time, and as you know we are releasing some balloons for his second birthday on Saturday, as are so many of you around the world.

Yesterday evening, our online charity went live. It’s now possible to bid on the amazing items that so many generous people and businesses have donated. Here is the link:

www.williamslegacy-auction.com

The lots include the following:
– A holiday for two in Bali;
– An iPAD;
– PADI Diving course, beginner or intermediate;
– Limited edition signed book by Amanda Prowse;
– Signed England rugby shirt worn in the recent England Vs Ireland game – framed;
– Signed Everton FC shirt – framed;
– £100 Jewellery voucher for Zamsoe;
– Detailed & lifelike A4 animal portrait;
– 2 x Limited edition signed prints from Aminart;
– 3 night cottage break for 2 in the Lakes;
– 2 Night boutique escape, your choice of hotel;
– England Vs Wales 2016 VIP tickets;
– 24 Hours on a private island for 2 people;
– 2 Nights, your choice of Champneys Spa’s for 2; and
– A jewellery set by Jacy and Jool’s.

All of the proceeds will be donated directly to The UK Sepsis Trust in William’s memory. So please support us in achieving our goal of £10,000!!!

Please share the link with your friends on your social media sites. We are so grateful and thankful for your support.


 

www.justgiving.com/williamoscarmead

A Children’s Book Dedicated to William

Me and my boy xx

Me and my boy xx

Well, these last few weeks, months have not only been extremely hard to deal with emotionally, with so many investigations taking place, and the conclusion of those next week, I have been trying to focus on fundraising.

Well I am working with Ron Taylor who is a director, writer and editor, and used to work with the BBC and Channel 4, to create an eBook of children’s illustrations in William’s memory. The eBook will be available on iBook, Amazon etc and we hope to have it published in January. The ISBN number has been registered so it is official!!

A little about the book

The book will be made up of 50 illustrations all donated by 50 wonderful and well-known illustrators such as Patrick Brooks, Paula Shapland and Nick Sharratt (Nick created the Tracy Beaker illustrations), you can find the full list here. All coming together to create an interactive eBook of colourful images for children under 9. Each page will have an interactive balloon (William’s favourite), the reward for finding each balloon will be perhaps farmyard animal noises, a train noise, and on one special balloon, a video of William. Also included will be photos of William and a foreword written by me. All of the proceeds from this book will be donated to the UK Sepsis Trust. Ron Daniels CEO of the Sepsis Trust will also be writing an introduction to the book, and how it has come about.

The book of course will be dedicated to William, and made in his memory. The book will cost only 99p with all proceeds being donated to the UK Sepsis Trust. I really hope that all of you will buy a copy or two and for only 99p who can argue!!

You can visit a preview of the book by clicking on this link.

You all know that on the 27th November it will be William’s second birthday, we could not let it pass without organising something special for our precious little boy. We decided, as William’s favourite toy to play with was balloons we would hold a balloon release, the balloons and all material will of course be biodegradable. Well, we set up a Facebook Page to invite our friends and family and well, we’ve had so much interest, we are now holding it in a public park, with a raffle and auction too!! If you would like to come along to William’s birthday balloon release it will be held on Saturday 28th November in Boscawen Park, Truro, Cornwall, at 1pm. I know that there are so many of you that live all around the world, but if you would like to be involved, we would love for you to release a balloon or 2 for William on his birthday and send us a photo. We are asking a minimum of £1 per balloon with all proceeds going to the UK Sepsis Trust via William’s Legacy Just Giving Page.

As there has been so much interest we decided to hold a raffle, and we have had some wonderful prizes donated from local businesses.

Not only have we had some wonderful prizes donated for the raffle, we’ve been given some substantial prizes for an auction too, these I will be starting in an online auction on my Facebook / Twitter accounts, where you will be able to post your highest bid. Prizes for the auction include:

  • Ipad Mini
  • Signed George Ford England Rugby Shirt (this must not be re-auctioned or sold on)
  • 1 night stay in the Executive Suite at The Alverton Manor Hotel, including dinner and breakfast.
  • Champagne afternoon tea for two at St Michael’s Hotel, Falmouth
  • Limited edition high quality prints from Ayub, photographer from Amin Art, known for his nature and wildlife photography including images of David Attenborough, amongst others.

The money we have raised so far has included a bake sale from the office team at Standard Life, raising £420, a figure that will be matched by Standard Life! Worldwide Financial Planning (where I work) will be match funding up to £1,000. Along with the raffle, auction and donations for balloons we hope to raise a significant sum for the UK Sepsis Trust, all part of William’s Legacy.

We really hope you are able to support us on the day, but if you’re not, we’d love to send you some balloons for a donation for William’s birthday, and of course if you are not able to make it, you can join in the online auction, and buy William’s children’s eBook when it is released in the New Year.

If there is anyone out there, that would like to donate any raffle or auction prizes they would be gratefully received, or anyone that would like to match fund what we raise, please get in touch.

And, thank you, so far including gift aid, over £7,700 has been raised in William’s memory.


 

http://www.justgiving.com/williamoscarmead

Sepsis – The Silent Killer

The Sepsis Six

The Sepsis Six

I was so drunk on apprehension and high on anxiety that the moment I sat down after the inquest I hit the wall running, at 100mph. The full force of the impact manifesting itself in an all-consuming emotional hangover. In the months leading up to the inquest I had to focus on arriving at the one goal I knew I had to be part of. Representing William, and to be his voice. The enormity of the task that lay ahead of me was overwhelming. I had long since given up trying to deal with people’s expectations. I knew that the only way I would reach that goal was pressure, and the only pressure that was acceptable was from me. Only I could prepare myself for the inquest.

I knew the day would be fraught with tension. I didn’t understand why we were there, and I still don’t understand now. As Professor Peter Fleming said “I think there is a very good chance that his illness could have been treated successfully.” To hear those words made any possibility of healing the wound an impossibility. The wound irreparably damaged. William’s death we knew in our hearts was avoidable but to have those words spoken by a world-renowned paediatric specialist after reviewing the evidence was gut wrenching.

As parents, we are not doctors, we worry, we panic, we ask a million questions but we have every right to. We trust and believe the health professionals that we are forced to rely on. Professor Fleming expressed concern that neither the 111 service nor the out-of-hours GP, had acted on William’s temperature change which had been over 40C on the Friday but had subsequently fallen to 35C on the Saturday, a symptom of circulatory failure, and later we found out, a symptom of Sepsis. We took William to the doctors on the Friday because we were concerned. We were reassured it was “nothing grisly” we followed the guidance and advice we were given. I was still worried and called for help on the Saturday. From the analysis of this phone call, which was played at the 8 hour-long inquest, Professor Fleming said he “was disappointed the ‘algorithm’ used by the 111 service did not appear to have assessed the situation effectively…they are working from a script, not their professional knowledge.” Ultimately, our little boy had been unwell for months with what we were told was “just a cough” in the latter stages he developed pneumonia, this caused sepsis (septicemia).

Who knows what Sepsis is? Who knows what causes sepsis? I had heard of sepsis, septicemia blood poisoning, but I never for one second sat and thought in that last week that William had it because I didn’t know what it was. As parents we had it drummed into us that if our children are unwell, always check for a rash, meningitis, do the glass test, meningitis kills. Every doctor who William saw or I spoke to were always very thorough in checking for a rash, but no-one discussed the symptoms or the possibility of sepsis. We were not warned what to look or check for.  There are several clinical indications for sepsis, one is a temperature over 38C or below 36C and another is a rapid pulse of over 90 beats per minute. William’s temperature on the Friday was 40.1C and his pulse wasn’t even taken. I will never understand, with a doctor’s knowledge, how this was missed. How William’s cough was never investigated and subsequently how the pneumonia was never diagnosed.  Ultimately causing sepsis which took his life.  It is estimated that 3200 people per year die from meningitis, but 37,000 people die from sepsis. I think it’s about time that sepsis should be granted the air time that meningitis has. Parents need to be educated, no more children should die needlessly like William.

We were let down, in the most unimaginable way. It is not fair that William had to lose his life in order to recognise that changes have to be made. What those changes are only time will tell. All I continue to do is just take one day at a time, I no longer pressure myself or set any unrealistic expectations, I’m breathing, that is a huge accomplishment. After all, people can try to imagine what it’s like in my shoes, but no-one can imagine what it’s like being in my head.