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14 Jan, 2011

Blighted by near death: Toby Mildon’s Story

Posted by: The Coaching Academy In: Coaching Articles|Life Coaching Articles|Personal Success|Success Stories

Blighted by near death: Toby Mildon's Story

Now in his late twenties, Toby was born with Spinal Muscular Atrophy (SMA) a neuromuscular condition that affects his overall body strength and prevents him from walking. He needs around the clock care.

However, despite spending his whole life in a wheelchair it hasn’t stopped him from leading an active and fulfilling life. But he almost didn’t live to fulfil many of his life’s ambitions as he was struck by critical illness and spent three months in a coma and on life support. Here’s his personal story.

As Project Manager for the BBC I work on Future Media and Technology and Chair BBC Ability (disabled staff forum). I am Assistant Producer for Champions Club Community and Personal Performance Coach having trained with the Coaching Academy. I’ve enjoyed successful careers as Engagement Leader for Cerner in the worlds largest healthcare IT programme and Consultant at Accenture for global Communications and High Tech clients. I also worked for British Airways as an Account Executive and LloydsTSB as young as 15.

I went to University of Derby and achieved a 2:1 in a Marketing Management degree and got Distinction in an Advanced GNVQ in Business after school.

I moved to London to pursue my career aspirations, own my own apartment in Fulham and have a team of live in Personal Care Assistants (PA) 24/7.

I’ve always strived to be a high achiever and leave a legacy. March 2010 was no exception – focused on my BBC career, building my coaching portfolio, chairing a national disability charity (JTSMA), producing a pilot for a new business entertainment TV show and more. Christmas 2009 was ‘planning time’, to decide what I wanted to achieve in 2010. So I produced a Mind Map outlining my goals. I lived by Stephen Covey’s principal of Begin with the End in Mind.

Whilst proceeding with vigour I developed a chest infection, which is common during winter. However, after my second course of antibiotics I became dehydrated from vomiting and stupefied. I go to A&E, had X-Rays and blood tests and the doctor admits me with a severe chest infection. One morning I’m found having a seizure and fighting for air. The doctors and nurses rushed to my bed and brought me around again. My chest infection got worse and I was suffocating and couldn’t breathe. I went into a coma and was put on life support to keep me alive – I lay in intensive care unconscious for two months.

I developed multiple organ failure – my kidneys, liver and stomach stopped working and I was on dialysis. An MRI scan revealed a bleed on my brain. A nasal gastric (NG) tube fed me nutrients and I had a tracheotomy in my neck. I had thirty tubes, bags and bottles connected to my body in all.

My Mum who had practically moved to London to be at my bedside went away a weekend break, however, soon after, the doctor summoned her, as they didn’t think I’d make it through the night.

In spite of this, I stabilised and two months passed before I woke from my coma. As I opened my eyes I was really confused. I thought I was 100 years old, that the BBC had fired me and the physios were out to kill me. At first I couldn’t talk. I used my eyebrows to say Yes (raising them) or No (a frown).

I asked the doctor whether I almost died and he honestly replied “yes, you almost did and you’re lucky to be alive”.

My whole world had shattered. Not a lot made sense. I didn’t care that my hair was falling out from the medication.

As I was just out of my coma one of my PAs handed in her notice and I was angry at her ‘bad timing’. I began poaching the nurses and one them introduced me to her niece who I interviewed in ICU and offered her the job.

When I first sat in my wheelchair my arms were so weak I just drove in circles. My first time outside ICU was to the tropical fish tank with a tranche of nurses, tubes and equipment. I stared mesmerised at the fish. I realised at this moment that what I appreciated in life had shifted if fish spellbound me.

An OT visited daily to exercise my arms and hands to get them working again. I couldn’t hold a pen or operate my iPhone. To this day I still can’t feed myself or drive my adapted vehicle. As soon as I had a Fluoroscopy to see whether I had the strength to swallow food my Speech Therapist and Dietician put me onto a puree diet. The first food I eat in over two months was pureed salmon and broccoli and mashed potato. I chuckled that the chef had shaped the pureed salmon into the shape of a fish.

No matter how much physio and suctioning I had I just couldn’t clear my chest. I was exhausted, depressed and desperate to go home. When I eventually left hospital I recuperated in Somerset.

I wanted to get back to ‘normal’ rather too quickly and so I arranged a phased return to work. I installed speech recognition software on my laptop and Access to Work funding for transport. Returning to work gave me structure and some purpose again. However, I struggled physically and emotionally. But I stuck at it.

Although I’m missing three months of 2010, this whole experience has had a profound impact on my life. Inspired by coaching, I’m writing a seminar and book to help others learn from my insights.

Here’s a sample:

I faced the ultimate fear – Death! Things I once feared feel less significant. My mantra is “well, [this or that] isn’t as bad as being on life support!” We’re born with just two fears: fear of falling and fear of loud noises. Every other fear is something we’ve learnt. Do these fears have a right to impede us? We created them!

  • Brainstorm all your fears. Write a list as long as you can. Write some more.
  • Read through your fears aloud. Listen intuitively to your body. Do you become tense? Does your heart rate increase? This is a good indicator of fear as discussed by Charles Darwin in his book “The Expression of Emotion”.
  • Score each fear 0-10. Where 0 fears have little impact on you, to 10 where you’re taken a long way outside your comfort zone.
  • Categorise your fears into ‘comfort zones’. For example, fears scored 6 or less you can cope reasonably well with. Scores 7-8 are uncomfortable. Fears scored 9 or 10 panic you. You decide your thresholds.
  • What do your high scoring fears tell you? What patterns can you see?
  • Tackle your highest scoring fears first. As Brian Tracy says begin by eating the ugliest frog first.
  • What’s the worst that can happen? If this fear comes true, what could you do to make the situation better? Are you really not in control of the situation? How can you regain control?

Priorities – what’s important?
Before the coma I was a busy man! Lying in hospital with no responsibilities I asked myself: “What is it that’s really important to me?” I was spending time on some things that demanded more of me than I got in return. What’s your return on investment in the things you do?

  • Write down everything you’re doing in your life – for yourself, work, spouse and family – everything.
  • Cross through everything you do because you feel you ‘should’ be doing it or someone might be disappointed if you didn’t do it. How much have you crossed out?
  • Put a star next to the things you want to do and enjoy doing. If you aren’t doing the things you crossed out, what would you do more of or start doing?

According to Stephen Covey’s Time Management Matrix we should spend our time working at the things that are Important but Not Urgent – the quadrant of quality and personal leadership. But most of us spend our time working at things that are Important but Urgent in nature – the quadrant of necessity.

Stephen Covey's Time Management Matrix

How can you avoid activities in Quadrants III and IV? How can you do more of Quadrant II? How can you reduce efforts in Quadrant I so you have more time for Quadrant II?

Family and Friends
I’m fortunate to have a loving family and great circle of friends. Families are important:

  • They are our first school after entering the world – we learn of love and shared experiences;
  • Family shape our personality and life as an individual;
  • Family is somewhere where we’re accepted without demanding much;

Think of the relationships you hold dear. How can you nurture these relationships? What one small gesture could you do right now to let someone know that you care about them? Actions speak louder than words. Do you hold any grudges? How helpful are these grudges?

Despite having a pretty horrific illness I’ve gained a lot of positive insights from my experience, which I’m glad to share with you. Confucius once said “the gem cannot be polished without friction, nor man perfected without trials” and one should “Never, never, never give up” – Winston Churchill.

14 Responses to "Blighted by near death: Toby Mildon’s Story"

1 | Tweets that mention Blighted by near death: Toby Mildon’s Story - Coaching Blog --

January 14th, 2011 at 12:48 pm


[...] This post was mentioned on Twitter by Jan Lonnen. Jan Lonnen said: RT @coachingacademy: Blighted by near death: Toby Mildon's Story – #coachingacademy #inspiration [...]

2 | Tweets that mention Blighted by near death: Toby Mildon’s Story - Coaching Blog --

January 14th, 2011 at 1:28 pm


[...] This post was mentioned on Twitter by John@TCM and rachelcdavies. rachelcdavies said: RT @tobymildon: The Coaching Academy has published my article – read it at for life tips! [...]

3 | Brandy D Shifllet

January 14th, 2011 at 6:28 pm


You’ve faced so much in your life and yet you still remain so positive. That’s what’s so amazing about most people with SMA. My daughter has it and is 6. I hope I have her around for a very long time and she’s just as sucessful as you.

4 | Nigel Hall

January 14th, 2011 at 7:31 pm


Thankyou for sharing your personal story, I think it is great how you use it to put ‘Fear’ into perspective. It made me appreciate how small my perceived problems really are.

5 | Dionne Lewis-Reid

January 17th, 2011 at 3:39 pm



I feel completely inspired and motivated by your story. It makes me remember that FEAR really isn’t a good enough reason to stop me doing ANYTHING I want to!

Thanks for the timely reminder!

Wishing you the best of luck for the future, I know I’ll be hearing more great things about you!!

6 | Margaret Hazle

January 17th, 2011 at 11:18 pm


Wow! Thank you so much for sharing your story – it puts a lot of my secondary fears in proportion and I will certainly look at the bigger things, with a view to seeing them through.
You are one amazing guy with so much to offer – a real inspiration and I know your book will be well worth acquiring.
Every good wish is sent to you, and may 2011 be everything you would wish it to hold.

7 | Toby Mildon

January 18th, 2011 at 5:14 pm


Brandy, Dionne, Margaret and Nigel – thanks ever so much for your wonderful comments and I’m pleased you liked my article. Your feedback is really encouraging. I’m thankful to the Coaching Academy for publishing my story. Brandy, I know a lot of people with SMA and not a lot holds us back. I’m sure your daughter will go on to do wonderful things. I wish you all the best for 2011. Toby x

8 | Corinne Ellison

January 18th, 2011 at 6:45 pm


Toby, what an inspiring story. I completely understand how you feel, having faced mortality myself last year when I had open heart surgery. Fear definitely dominates if we let it. Thank you for highlighting the Time Management Matrix, so useful to make an assessment on the current direction of your life. Above all, mental strength and the desire to succeed despite facing adversity, is what makes people stand out. You appear to have these qualities. I wish you well for your future endeavours.

9 | Peter Buckingham

January 18th, 2011 at 10:46 pm


Wow! You certainly put life into perspective.
I myself had Traumatic Brain Damage in a car accident in 1996. I was in a coma 6weeks, confused for a further 6weeks and then had PTA (post traumatic amnesia) until now.
I will certainly utilise the points that you mention in order to make the best of my life.
Thank you.

10 | Emma Wimhurst

January 19th, 2011 at 10:36 am


Toby, I am stunned by your story. I can’t believe that this time last year, I attended your annual SMA conference and you were so fit and well and then to be struck down and in a coma for 3 months. I am so sorry that I didn’t know. I have known you for over a year now – your determination to succeed and your ability to simply find way around or through obstacles has always inspired me and now to read how you have coped with 2010 and everything which happened, is yet again truly motivational. We all have issues and face difficult circumstances, but quite frankly Toby, your situation is tough on a daily basis, even tougher last year and yet you still remain positive, focused on the future – and quite frankly Toby you are “one amazing person”. As Peter Buckingham said in his comments – “you certainly put life into perspective”….. you most certainly do. I can’t wait for your book Toby…. I wish you a brilliant 2011,

Love Emma x

11 | Toby Mildon

January 19th, 2011 at 6:22 pm


Emma, Corrine and Peter – thanks for your comments. Corrine and Peter, glad to hear you’re back to health too. Emma thanks for your kind words.

12 | Fenella Fudge

January 20th, 2011 at 12:41 pm


What an extraordinary story, Toby – your indefatigable determination is truly humbling and inspirational!

I hope 2011 is kind to you!

13 | Frances Nelson

January 21st, 2011 at 5:44 pm


We all knew you were 1 amazing guy all those years ago at PMS, reading your story has just proved that. Your success in life and your recovery from such a traumatic illness is ispirational and I feel honoured and truly humbled to know you.

14 | Toby Mildon

January 22nd, 2011 at 9:58 pm


Thanks Fenella – hope 2011 is good for you too.

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