OK, so to set this page up, it asked me for My Story. I have never tried this before, so let's give it a go (Please note that you may have to view this on a Lap Top (not mobile) if you want to read to the end).
In late 1994, My Mum received a hospital appt in the post asking her to go to the James Paget Hospital to have some hereditary medical issues checked out. Mum suggested I go too, which I agreed to. We assumed it was an unnecessary, time-wasting, formality, so we sent my Dad and my Wife-to-be (Sam) off to their jobs, whilst Mum and I went off to see Dr Grabau.
Dr Grabau's welcoming line was as simple as "Hi, I am the leading Heart Specialist here and I have just received your family tree from Addenbroke hospital and need to run some tests. You will be here for about 4 and a half hours and Stuart, your Mum will always be one test ahead of you". MMMmmmm, maybe not a time-wasting formality afterall!
After 5 hours of continuous, different, back to back tests, I finally laid eyes on my mum again outside Dr Grabau's office. Queue the tears.
In we go to meet Dr Grabau again and his second greeting went along these lines "I am sorry to tell you that you both have Marfan Syndrome. This is what killed Stuart's Grandad at 45, Stuart's Auntie at 48 and Stuart's cousins at 36 and 40. Your family are the first and only family diagnosed with Marfan in the East of England. In England we know almost nothing about Marfan Syndrome but they are now investigating it in the USA. The one thing that we do know about Marfan Syndrome is that your Aorta will burst in your mid 40s and you will die instantly, as happened to your relatives. There is no cure or treatment available. In addition, you can't have kids as you have a 50% chance of passing it on (I was getting married a few months later #headspinner). As your family are one of the first diagnosed in England, Addenbroke will visit you directly on a fortnightly basis to aid their investigations into Marfan Syndrome. I am sorry but i can't answer any questions because I don't know anything more about Marfan. If you want to find out more, contact the Marfan Association directly and they will send you whatever info they have".
That day I set myself a target of making 45 years old (my "big" birthday) and in May 2017 (if I make it 😉), I am 45. So, for the month of May 2017, I am going to see if I can raise £1,000 for the Marfan Trust.
Anyway, we did see Addenbroke every fortnight thereafter. Partly to have loads more tests so they could find out more about Marfan and partly to see if we could have kids?".
Over the next few months, leading up to our wedding, we were told "you can't have kids" then "Actually, we don't think you've got Marfan, so you can have kids" then "Oops, sorry, you have got Marfan, so you can't have kids" then "Sorry, our mistake, yes you can" then "No, you are a Marf, you definitely can't have kids".
By this time, we were just weeks away from getting married. What a catch I felt - Dead by 45 and who knows if we can have kids or not? Thankfully Sam dug in when it would have been easier to bail out.
In addition to all of this, we were having to see our own doctor, to explain to him and the rest of the Doctors at the surgery, what Marfan was all about!
Then just before we got married we received our second Marfan Association magazine. Front page headline "Man with Marfan lives to 60"......and that was the magazine headline. It broke me a little. If I am the second luckiest guy with Marfan in the world, then I might make 60. Marfellous!
We got married in 1995 and we were still being seen regularly. At this point we were told we could have kids and Shaun arrived in 2000. Time passed and in 2003 Sam was pregnant again (about 20 weeks) when we received another message from the hospital "We have found some more stuff out about Marfan and, NO, you shouldn't have had kids". Cheers for the timing guys, we already have one and a second on the way!
Sam then had to have extra scans and tests. They discovered that it was a little girl but wanted to find out if she was a Marf with a dodgy Aorta (NB. that unborn little girl later became Toby!). However, nothing much came out of that and in May 2003 Toby arrived.
Life (and tests) went on thereafter and when the kids were about 7 and 4, some clever sod found a way of telling for sure, from blood tests, if you have Marfan or not. Shaun, Toby, my Mum and I had our bloods sent over to Amsterdam. Me, my Mum and Shaun were positive. Toby negative (Blew my theory of always treating your kids the same. Awkward! Not least for Toby and it has been tough for Toby ever since).
So, I am now having yearly Echo's, ECG'S etc.....and Shaun is still seeing Great Ormond Street Hospital every 6 months (which explains all our London football ground tours!). Since Shaun's first GOSH trip, his first question every visit is "I don’t care about my heart, Can I keep playing football?". Luckily, the answer "was" always yes. Granted, from about 7, he couldn't play out of goal anymore (and he had just had an outfield trial at NCFC). So, he had to retrain as a keeper or hang up his boots. We bought the keeper gloves the following day and he made it right thru kids football as a goalkeeper!
In Feb 2016, Shaun moved to adult football and in July 2016, he played a pre-season friendly. He got his nose broken...... twice..... in that one, life changing game. Marfan isn't just about your heart. Marfan is Eyes, Skeleton and much, much more ...... So, Great Ormond Street Hospital wanted him to stop playing and that was Shaun's last ever game of proper football.
On the flip side, not being a quitter, he is now one of my u14 coaches (and a bloody good one too) and he has also just started playing 6 a side football, as it is non contact for keepers, albeit we are getting a special vest sent over from America to protect his heart from the ball.
So, as I am sure you have worked out now, the biggest risk of having Marfan = having an Aorta that grows and grows until it bursts (= death). in 1994, there was nothing they could do. Now there are pills to slow the Aortic growth (I've been taking 7 pills a day, Shaun 3) and there is now the option when the Aorta hits a certain measurement (the infamous "Z" score) of having a mechanical Aorta fitted.
However, as I have hinted, there are other perks of having Marfan too. For me, these include:
Having an underactive thyroid (=constant tiredness)
Hyper Mobility (Joints that bend a lot more than they should), meaning my "Marfan Ankles" have left me lying in the middle of a few roads (always roads!) with no warning at all (when sober!).
Legs that ache 24 hours a day (to anyone who knows me well, that is why I always sit on the floor!).
I am tall, gangly and thin (well, I used to be thin).
Amblyobia (shockingly bad vision) in my left eye.
I need to keep my stress levels down and working at Aviva for 27 years and managing a kid’s footy team for 14 years is the perfect way to do that.
However, thankfully when it comes to Marfan, I am one of the really, really lucky ones and I really, really am one of the lucky ones. There are many, many Marfan sufferers who have things much, much worse than Shaun, my Mum and myself.
So, getting back to my point. My aim since 1994 has been to make 45, so if I do see the 22nd May 2017 (and I do hope to), then mission accomplished and to celebrate, I want to raise £1000 for the Marfan Trust, so that they can continue improving things for all Marfan sufferers.
So, If you are still reading this then thanks for letting me spread the word ..... and if you are willing to donate on here, then massive thanks for your support, it is really, really appreciated!
Finally, just for fun, here are a few famous people who have had Marfan Syndrome:
Abraham Lincoln, Julius Cesar & Osama Bin Laden (Leaders!?!?!?!?).
Isaiah Austin (Basketball) and Flo Hyman (Volleyball) - It is worth googling them and reading their stories!
Michael Phelps (Swimmer)
Sergei Rachmaninov & Niccolo Paganini (Composers).
Austin Carlile and Bradford Cox (Singers) - Again, Austin is worth a google!
Thanks again for your support guys!
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undertaking different fundraising activities for The Marfan Trust because I wanna raise money to help the Marfan Trust!
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