OK, here goes, I set this fund raising page up in 2017 and thanks to a fantastic level of support, we have raised lots of badly needed funds for the Marfan Trust.  However, this Just Giving account automatically expires in Nov 2021.  So, it's time for one last burst to raise a bit more money for the Marfan Trust.  So, on the 1st August I will be running the London Landmarks Half Marathon and on the 12th September I will be running the Great North Run
Half Marathon and if you would like to sponsor me here then I really, really appreciate it - Thank you!

Just for awareness, I am also blogging my experiences throughout the last couple of months of training and you can find these here - https://stusadler24.wixsite.com/halfmarathonwithmarf

For those that do not know how Marfan has affected our family, then please feel free to read on (Please note that you may not
reach the bottom if you are reading this on a mobile but you can obviously switch to lap top / PC if you want to).

Anyway, here goes, in late 1994 (I was 22), 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 with her as the letter referred to hereditary issues. I agreed. We assumed it was an unnecessary, time-wasting, formality, so we sent my Dad and my Wife-to-Be (Sam) off to work, whilst Mum and I went off to see Dr Grabau.

So, Mum and I walked into Dr Grabau's room and his welcoming line was as simple as "Hi, I am the leading Heart Specialist at this Hospital and I have just received your family tree from Addenbroke Hospital and need to run some tests on you both. 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 after-all!

After 5 hours of continuous, different, back to back tests, I finally laid eyes on my mum again outside Dr Grabau's office. Queue floods of tears!

In we go to meet Dr Grabau again and his second greeting was something like "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 only family in the East of England diagnosed with Marfan. In England we know almost nothing about Marfan Syndrome but they are now researching it in America. The one thing that we do know about Marfan Syndrome is that your Aorta will suddenly burst in your mid 40s and you will die instantly, which is what happened to your relatives. There is no cure or treatment available. In addition, Stuart, you can't have kids as you have a 50% chance of passing it on" (NB. I was getting married a few months later #headspinner). "As your family are one of the first diagnosed in England, Addenbroke will come and visit you on a fortnightly basis to aid their research into Marfan Syndrome. I am sorry but I can't answer any questions because I don't know anything more about Marfan yet. If you want to find out more about Marfam Syndrome, 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 which I am glad to say I achieved in May 2017 and I had a very special birthday (that was my big birthday!) thanks to many people!

Anyway, back to 1994. We did see Addenbroke every fortnight thereafter to keep having more tests. Those tests were partly to monitor my Mum and I but also to see what they could find out about people with Marfan. They were also to see if there was any chance Sam and I 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 definitely got Marfan, so you can't have kids" then "Sorry, our mistake, yes you can have them" 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 pretty sure I couldn't have kids. Thankfully Sam dug in when it would have been easier and more sensible to walk away.

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. We were actually taking them copies of all the literature that we were getting from the Marfan Association too.

Then I 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 to think that that could make the magazine headline! If I am the second luckiest guy with Marfan in the world, then I might make 60. Marfellous!

We got married in 1995 and thereafter, we were still being seen regularly. In 1999, we were told we could have kids again! 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 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 our second child was to be a baby girl but wanted to find out if she was going to be a Marf. Nothing else really came out of that and in May 2003, that little girl was born....and we called her (???) Toby.

Life (and tests) went on thereafter and when the kids were 7 and 4, some clever sod found a way of telling for sure, from blood tests, if you have Marfan or not. So, Shaun, Toby, my Mum and I had our bloods sent over to Amsterdam. Me, my Mum and Shaun were positive. Toby negative (that blew my theory of always treating your kids the same!).

Shaun then went to Great Ormond Street Hospital (GOSH) every 6 months until he was 18. Shaun didn't mind going to GOSH (and we always tried to include fun in the trips - normally a tour of a London Football Ground!) but his first question every visit was "I don’t care about my heart, can I keep playing football?". Luckily, the answer "was" always yes, however, he was told at the age of 7 that he couldn't play outfield anymore (and he had just had an outfield trial at Norwich City). So, he had to retrain as a Goalkeeper or hang up his boots. We bought the keeper gloves the following day and he made it right thru kids football as a goalkeeper (even getting spotted by NCFC again during a school match, but he then got dropped again when they found out about his medical history).

In Feb 2016, Shaun moved to adult football and in July 2016 (aged 16), he played a pre-season friendly. He got his nose broken...... twice..... As I watched him play on, I just knew it was going to be his last ever game. Marfan isn't just about your heart. Marfan is Eyes, Muscles, Joints and much, much more. When we told Great Ormond Street Hospital they wanted him to stop playing immediately and that was indeed Shaun's last ever game of proper 11-a-side football (that his Mum and I know of anyway!).

So, Marfan affects an awful lot of things but like I say, the biggest worry with Marfan is about the Aorta growing and growing until it bursts and you die.  in 1994, there was nothing they could do, hence you were not expected to make it past your mid 40's. Now, Shaun, My Mum and I have an Echo or MRI every year to measure our Aorta. When the Aorta hits a certain measurement (the infamous "Z" score) we will need a mechanical Aorta fitted. Luckily though, since 1994, pills have been created (e.g. Losartan) that slow the Aortic growth
down (I take 6 pills a day, Shaun 2 (his other one being a Beta Blocker)) which are a big reason (the reason?) why My Mum and I are still here.

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 (it's always when I am crossing roads ... and often in York for some reason!) with no warning at all.
- Legs that ache 24 hours a day (to anyone who knows me well, that is why I always sit on the floor and move constantly!).
- I am tall, gangly and thin (well, I used to be thin).
- Amblyobia (shockingly bad vision) in my left eye.
- I obviously need to keep my stress levels down and working at Aviva for 30 years+ is the perfect way to do that!?!?!?!? (Managing kid’s footy team for 15 years was a pretty good way to relax in my spare time too!!!).

All in all though, the one thing I would like to ask of you all (if you are
still reading ;-)), is that you are all aware of what Marfan Syndrome is and how to spot it. One day you might just be able to save someone's life (as the life expectancy for someone who has Marfan that has not been detected remains at 45). So, if you see someone very tall, with long slim arms and legs, it might just be worth a mention!!! Us 4 are always playing a game of "Spot the Marf" when we are out. To help build the picture in your mind, Shaun was always nicknamed Crouchy, Peter Crouch is a stereotypical Marfan build (but does not have Marfan!?!?!?!) but that sort of build is what you are looking for
(feel free to go into google images and search for Marfan Syndrome!).

Anyway, just for a bit of fun, here are a few famous people who have had / are believed to have had Marfan Syndrome......

Leaders (?) - Abraham Lincoln, Julius Cesar & Osama Bin Laden

Sport - Michael Phelps, Isaiah Austin and Flo Hyman

Composers - Sergei Rachmaninov & Niccolo Paganini.

Singers - Austin Carlile and Bradford Cox

It is well worth reading the Marfan Stories of Flo Hyman, Isaiah Austin and Austin Carlile, if you have time too!!!

Like I say though, Shaun, My Mum and I are all on medication now and we all have our Aorta's measured every year to ensure that we remain below the magical "Z score".

In terms of sport, Shaun and I have been prevented from doing a lot of sport (e.g. Football, Basketball, Weights, Hockey, Rugby, Gym, Running etc......) over the years.  Partly due to pressure on the Aorta (we were not allowed to get our Heart Rate above 100) and partly due to concerns about contact to the chest that would rupture our Aorta. However, Shaun and I are now allowed to run again (sensibly
of course!) which is great news (especially for me).

So, all in all, things are a lot better right now than what was predicted back in 1994 and My Mum, Shaun and I are the very, very lucky ones when it comes to Marfan. The vast majority of Marf's have things way worse than us (my cousin was always in and out of hospital having operations all over his body). So I am really looking forward to trying to raise more money for the Marfan Trust from Mid July to Mid Sept this year.....but be warned, Shaun has already talked about
climbing Mount Snowdon or Ben Nevis for charity in 2022!!!

Any question or thoughts though or if I can help in anyway, please do ping me on 07557 478138 or stusadler24@googlemail.com.

Thanks for your time and take care!

Stu

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