Transcript: Lucy Morris – Living with Marfan Syndrome (Max#46)

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Kevin: Welcome to Maximise Potential the podcast to educate and motivate through a range of original interviews designed to help you maximise your potential.  Brought to you in association with the award winning recruitment group Jenrick.

Welcome back to Episode 46 of the Maximise Potential Podcast.  As regular listeners of the podcast are well aware our aim is to constantly seek out diverse interviews and stories that will give us all a different perspective on life and just before Christmas I was introduced to an incredible young lady called Lucy Morris. 12 year old Lucy Morris has not broken any records, scaled any mountains, launched a successful business or written a successful bestselling book. Lucy’s story is completely different to any of these yet equally compelling.  Anyone who meets Lucy will immediately see a girl who likes to ride horses, swim, go to school mostly and enjoy the kind of life that any other 12 year old would have with their friends and family. Yet scratch beneath the surface and you quickly discover that Lucy has spent her entire life in and out of hospital for operation after operation the most recent of which was to stabilise a potentially life threatening heart condition.  However what took be aback was just how Lucy takes all of this in her stride and this is why I felt it was imperative that we shared her story on the podcast.  So please sit back and enjoy meeting Lucy Morris and her mother Alison as they share a small snapshot of their life with us on the Maximise Potential Podcast.

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I am very fortunate to be sitting today with Lucy and Alison Morris and we are going to be talking about a condition called Marfan which if I am correct in understanding from Alison impacts as many as 1 in 5000 people throughout the UK and yet it is incredible it is a condition that hardly anybody knows about.  Why don’t you give us a bit more about your experience with this because even with Lucy and we are very fortunate that we have actually got both of you here just to give us I guess a families perspective on what it’s been like to actually live with this, to grow up with this throughout the years. But it would be lovely to gain a bit of an insight into your world in that respect because it took years to actually identify it with Lucy and I think well you are both going to go into a little bit of that now aren’t you. So when was it actually discovered and how was it discovered?

Alison: It was discovered last June, I was sat in the kitchen my laptop was on the island unit, I had just put in a condition that Lucy had already which was Scoliosis and it came up with some Syndromes on the bottom left hand corner. So I just clicked on the first one which happened to be Marfan syndrome and some of the symptoms came up that looked identical to what Lucy had. So I called in my husband Steve and said look Lucy has a lot of these symptoms and Steve said well she hasn’t got the heart one. So I said well a year ago Lucy did say that she had some issues at school. We called Lucy in at that time and I said to Lucy when was the last time that you had a funny feeling in your chest and she said last night after watching a film. So me and Steve looked at each other and I let Lucy go back into the lounge and we said look we need to get hold of doctors. So Steve rang the doctors the next day we got an emergency call and we went the following day and saw the doctor. He was a bit dismissive actually said that it is unlikely that she will have Marfan’s and her heart seems fine.

Kevin: Can I ask you just a quick question was the doctor actually aware of what Marfan’s is or did they even?

Alison: He seemed to be aware because he seemed to say that oh she should have this and she should have that and I sort of argued that she had got this but he was aware yes because he is a heart specialist there at the doctor’s surgery. But I said, I think I sounded a bit determined in my voice, so whether that helped us get an appointment with the paediatrician I don’t know but he referred us to the paediatrician and we got that appointment a month later. We went on a Wednesday to see the paediatrician Dr Vecamen and we explained why we were there and she put a stethoscope to Lucy’s heart, she measured Lucy’s arms and then she sent us down for an echogram. We came back after that and she was a bit worried she tried to explain the echo to us and you know we didn’t really understand it, we were meant to be going to France that evening so she said I would like Lucy to go to Birmingham Children’s Hospital. So they were just waiting to hear from them really. So we waited and we waited and they couldn’t get hold of them so we went home and then they said that we had an appointment on Friday the same week. So we went to Birmingham Children’s Hospital on the Friday and we think they were just going to give us a 24hr monitor which is called a Holt Monitor and send Lucy away but me and Steve, and Steve being Steve he persevered and we wanted to see a consultant and so we were in the middle of the waiting room and we saw a consultant and immediately explained why we were there. And so she sent us for a scan and an echo and obviously they found aortic dilated and we went to see the consultant after this and he told us that Lucy’s aortic root had dilated and that was that really.  All a bit of a shock from then on and explained what it would mean and all this. They wouldn’t actually diagnose Marfan’s at that time because it had to go through a geneticist person to actually diagnose it. Just dealing with the heart, so we stayed in. She had to go on Losartan there and then which was to lower the blood pressure and then we just had to wait for an operation which happened a month later I think, or was it three weeks later. We got called in to have the operation on 22nd July.

Kevin: And all of this has happened in the last year?

Alison: Yes this was June and July last year.

Kevin: And this is where I am going to ask Lucy to join in.

Lucy: Hello.

Kevin: Hi Lucy. Just tell everybody how old are you?

Lucy: I am 12 now this year and I was 11 last year when I had the operation for my heart.

Kevin: Was it all a bit of a shock for you or did you feel actually almost as if you were expecting something to happen from how your parents were sort of working with you and the appointments and everything at the hospital?

Lucy: It was quite a shock but my heart seemed to have palpitations and stuff and so it like seemed like there was something with my heart that was wrong but I didn’t expect it to be as big as it was.

Kevin: And how do you feel now?

Lucy: Quite relaxed about it because the nurses like and the doctors talked me through what it was and stuff.  So basically I just now quite normal, well not normal, but like glad that it’s over.

Kevin: And it sounds like if I’m reading between the lines correctly but it sounds like it is just nice to be able to understand everything because you were just talking about how it was nice just to be talked through everything with the doctors.

Lucy: Yeah it is nice to know what is going on and happening.

Kevin: Good. I am going to ask your mum though to take me back, all of this has happened in the last year. Lucy has just told us how old she is so why don’t you take us back a bit into her early childhood and maybe explain, because this is hardly the first clue that you’ve had that has helped you sort of reach the conclusion that you managed to get to last year, there has been lots of things that Lucy and you as a family have gone through over the years. Lots of treatments haven’t there.

Alison: Yes we have got a file full of appointments which started when she was 18 months.  I was giving Lucy a bath and realised that she had a misshapen back and it looked quite deformed. So we went to the hospital, they referred us again then to Birmingham Children’s on Christmas Eve where we had all checkups and x-rays and they decided that it was Scoliosis. From then on she was having to have a plaster cast first six months then a brace which had to be strapped to her and tightened so it kept her spine as straight and try and keep it straight as it possibly could and in fact straightening it when she is growing. We had to have it changed quite often because she was only two and a half at this point so she was growing quite a lot so we had to have it changed quite a bit. It was very hard putting a brace on because it had to be so tight that Lucy had to lie on the floor and I had to pull the straps across and standing her up then she used to cry. It was quite hard to put this brace on but it had to be done to hopefully not end up in an operation. And then the curve was correcting well at the bottom near her hips but at the top it wasn’t getting better and the only way forward was either to put her in a brace that goes round the neck or to have an operation. The consultant said the brace around the neck had more side effects for women in older years than actually having the operation because it was a cosmetic thing. It wasn’t very attractive actually. So we opted for the operation which was actually done in November 2005 so she had rods screwed into her spine. And then from then on she had to have lengthening connective changes and then a complete rod change. But with all this happening as well she also had flat feet so we were under consultant when she was two with flat feet. They put it off and said it should get better.  It didn’t get better so we said again when I think she was about seven or eight so they put us to another consultant and she was meant to have insoles in her shoes. Well at that time I couldn’t put the insoles in and they didn’t say it was going, it wasn’t going to help in the end so I didn’t put them in because Lucy used to cry and she was still having the brace at this time so I couldn’t do both of them at the same time. So we left the insoles out and just carried on with the bracing for her spine.

And then she had problems with her eyes, she had water legion so we had to go to the ophthalmologist for her eyes. Which later on actually when she was 10 she had a lazy eye which we went again about that and they said she is stigma short-sighted. Eventually it was 2011 on 12 February when she had an operation to put bolts into her ankles to hopefully try and get the flat feet sorted because she had very severe flat feet by then. And she had the operation. She had plaster casts on both feet for six weeks.  Took us ages to get Lucy back walking again. A lot of physio and she was very frustrated with this. And then that June was when we found out about her heart. So we had a lot of issues mainly before then with her back. That was the main issues with the hospital appointments it was every six months at first and then just with her eyes, with her teeth, she had to have a brace into her teeth because she had high arch.

Kevin: Lucy is mouthing to her mother exactly what she had. So go on you tell everybody.

Lucy: High palette and narrow teeth wasn’t it, yeah. A metal brace to open my teeth like widen them so it’s not like narrow.

Kevin: So let me ask you since you’ve been a very young girl how frequently have you been in and out of hospitals or consultants or?

Lucy: At least once a year but, wasn’t it yeah.

Alison: As I said before it was probably once every three months and now you are having appointments, I am stacking them up for next year now in the diary. There is three appointments for next year already. So it’s probably four times for hospital appointment, twice a year for treatments which went down to one a year. File full of appointments, follow up appointments, checkups, constant with flat feet, spine, heart. You’ve been signed off for your eyes now haven’t you. Until when it happens that you get.

Lucy: I decide to have something to help.

Alison: Because you won’t be able to see because you are seeing double too often and it might affect your driving.

Lucy: When I am older not now.

Alison: So that will be your decision won’t it when you are older if it gets too bad.  So quite a few times.

Kevin: So in and out of hospitals at least well as it transpired Lucy starting with just once a year but in actual fact it seems a lot more frequent than that.  What your father in particular has told me about you Lucy is the fact that throughout all of this that you just get on with life, you just get on with school, you get on with your homework and you’ve always got a smile on your face.  So go on tell us a bit more about that. Is it just something that you just think oh well I’ve just got to go to hospital, I’ve just got to go to the doctors and deal with that and I’ll just crack on with all the other aspects of my life.

Lucy: Yeah because I try even though like I have this syndrome and have to go in and out of hospital I try to like maintain a normal lifestyle. I try and do everything that I can and just have a go. I mean you don’t know that you can’t do it unless you try so yeah.

Kevin: And how much can you do, it sounds like a lot.

Lucy: I can do a fare bit. It is only like a bit that I can’t do so I’m not really bothered about it. And even if my friends can do it they like help me with it and try and like help me a long a bit. And my family as well.

Kevin: Tell me what you enjoy doing most outside of school.

Lucy: I like swimming.

Kevin: Do you. What’s your favourite stroke?

Lucy: I like going underwater but that’s not really like proper swimming. But I like breaststroke.

Kevin: And do you swim just for school or just for fun?

Lucy: Just for fun really yeah.

Kevin: And what about an example of where you said your friends would often help you out on something. What is an example of that?

Lucy: PE if it’s like a certain activity that I can’t really do they help me try and do it. Like help me along and if I need help maybe come.

Kevin: Excellent. Rumour told me that out of everything that you’d gone through over all the years of you growing up with all these different things that you’ve coped with that the most nervous thing that you’ve ever done is sat down to do this interview. That can’t be true.

Lucy: Yeah. I’m quite shy but yeah.

Kevin: Well you are doing a great job today. What I’d love to do now is both of you have a wealth of experience through dealing with Marfan’s and dealing with all of the symptoms that you had preceding it before you realised what condition you were actually dealing with. You are both in a really good position to help advice other people who may be going through a similar situation or maybe even going through a situation of their own unrelated to this. I would like to ask each of you individually what advice could you pass on because of the experiences that you have gone through that may help others?

Alison: Well finding out by looking on the internet after doctors throughout the years from the age of two seem to have missed these symptoms and for me just going online and Googling one of the symptoms and coming out with the diagnosis of Marfan’s syndrome is quite a scary way of thinking. But if you have got any issues with your children I think you should take it into your own hands and either pester your doctor, if nothing happens with the doctors then go online and Google the symptoms and see what might come up and then go back to your doctor. I think persistence is normally a mother’s instinct and you know your children the best, better than the doctor. You have lived with your children you know all the symptoms they can have and I think you have just got to take it upon yourself to diagnose these things and then go to the doctor and be referred to the specialist people that you need to. But it is quite a scary thought that it takes a parent to do it but knowing your children has got to help. And I think the doctors need to know all the symptoms of the syndromes and what to look out for the slightest thing and react upon that and not actually just fob you off with something that it is just this or just that. It should all be checked out and also with heart issues it would be lovely if we could have more heart checkups at different age groups throughout childhood to check up on all these heart issues because without Marfan syndrome there is also a lot of other heart issues that could be picked up. So more heart scans would be brilliant. I know it’s always a cost but if it saves children’s lives then it has got to be of benefit. And just make people more aware of Marfan syndrome because everyone that we have spoken to saying our daughter has got Marfan syndrome are always very inquisitive to know and understand what the condition is and there is so many issues with Marfan syndrome that it’s amazing that it isn’t ever picked up because there is loads of symptoms involved with it. So I think to just get it out there and show what the symptoms are with Marfan’s so that people can say well my child has got this, has got that I need to be checked out. It has got to be a beneficial thing to do and hopefully save our children’s lives in the future.

Kevin: Thanks Alison. What about you Lucy if you were trying to help someone else who was a bit younger than you going through all the changes that you have gone through what would you like to say to them?

Lucy: Well basically if you have like any concerns about what is happening with you and if there is any problems that you are concerned about tell them to your parents and just let them know so they can do what they can like get in touch with doctors. So it can be found out and basically could save your life.

Kevin: Do you think it is very easy for a child just to think oh they shouldn’t mention it, they are just bothering their parents with something not important?

Lucy: Yeah because if you have never experienced it before you could just think it’s normal. It will happen to everyone but it doesn’t always happen to everyone and might not so it’s important to tell anyone you can.

Kevin: Yeah so just talk to people it sounds like is so important.

Lucy: Yeah it is. It helps.

Kevin: That’s wonderful. I am going to draw this to a close and I would like to thank both of you for coming on for this interview today because the information that you have shared about your stories and about the events that have happened with you and your family over the years is going to help other people who are trying to grasp what Marfan’s is and also how it could be effecting them. So I want to thank you both for your time.

Alison: Thank you.

Lucy: Thank you.

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Kevin: Kevin: Thank you to Lucy and Alison for agreeing to share a small part of their story with us on the podcast and in the process help to raise much needed awareness for Marfan’s syndrome. As with all of our podcasts we are here to share the story of an individual who shows incredible courage and resolve and I believe that Lucy and her entire family are wonderful examples of this. Lucy’s philosophy of maintaining as normal lifestyle as possible and to just have a go at things because she doesn’t know if she can do them until she tries is a perfect example to us all of how not to allow things in our life to limit what we can do. I also applaud Alison’s approach not to be passive in any situation that affects you and your family and by taking the lead in their situation it has completely altered the direction of events and for the better. A key reason why we were so touched by Lucy’s story is that we’ve subsequently discovered that there are an additional 9000 people in the UK who are currently unaware that they have Marfan’s syndrome and if left untreated it can lead to serious heart conditions which can be fatal.

I am going to direct you all to a website where you can learn much more about Marfan syndrome and see an incredible charity challenge that is taking place this year to help raise awareness and funds for this condition. Just go to www.drivenatheart.co.uk for more information.  I have ensured that there is a web link for that website in the show notes. Thank you as always for tuning in and please come and connect with us on Twitter, LinkedIn and Facebook. A big thank you as well to the Jenrick Recruitment Group who make this podcast possible. And a final thank you to Xerxes music for his wonderful music. Speaking of which here is ‘Fight fear with hope’ to leave you with. Bye for now.

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Interview transcription kindly provided by “AP Transcription” – for more details, please contact: peterstranscription@gmail.com

About the Author

Hi, I'm Tom Burkinshaw, I co-produce the Maximise Your Potential Podcast and Website and my goal is to help as many people as possible be successful in life, careers and business, by offering free coaching and mentoring through a series of unique interviews from inspiring people who all display exceptional self-belief, mental toughness and desire to achieve. Thank you for taking the time to visit Maximise Your Potential!