A message from 'The Somerville Foundation'.

Victoria works for The Somerville Foundation (the charity for adults who were born with heart conditions) and the Children’s Heart Federation.

This split role focuses on managing volunteers, developing events and support services (such as the helpline) and editing the magazine.

She also works directly with teenagers as they transition from child to adult care, and from childhood into adulthood.


Victoria’s written this article to explain a bit more about these two charities and how they can help you...



Growing up, moving on….there’s a lot of support out there!
Getting to know The Somerville Foundation – we’re here for you

The Somerville Foundation (which used to be called GUCH PA: Grown Up Congenital Heart Patient’s Association), is a charity that supports teenagers and adults who were born with heart conditions. It’s a place for everyone with a heart condition – and can be helpful for parents, friends, carers – even teachers and employers. Everyone who is involved with your life can access information and support from us in various ways.

Get together at our events:

Through events such as weekends away, bowling, karaoke and theatre trips, we encourage our members, their friends and families, to meet and mix and make friends, to offer support to each other and have fun. We also have a conference-style event each year, where medical staff specialising in congenital heart medicine speak and share some of their knowledge and advice on all kinds of issues that can affect a person who is growing up with a congenital heart condition. With members from all around the UK (and some even further a field!), our events are always good fun with an interesting mix of people to get to know.

Get supported with our help services:

If you have any problems, worries or questions about your heart condition, or if you just want someone to talk to about life in general or anything on your mind, you can also use our help services – email or phone.

We have a dedicated support worker called Anne Crump, who is available Weds-Fridays to chat through, in confidence, anything that may be worrying you, and she can provide practical help for relaxing and de-stressing. Anne also works especially with teenagers and young adults, producing events and e-newsletters.

Check out our range of leaflets, covering topics like insurance, pregnancy, contraception, lifestyle issues (sex, piercing, tattoos…), and loads of other areas that may be of interest to you, or crop up as issues at some point growing up.

Get connected with our forums and Facebook:

We have a lively Facebook and Message board, and we’re on Twitter too, so there’s loads of ways you can connect with us and stay up to date with what’s going on. You can meet our members virtually as well, and connect with other young people going through similar things to you.

Get informed and entertained with our magazine:

Our magazine, GUCH News, comes out every 3 months and is packed full of stories from our members, articles from medical staff, information and events news, plus fun competitions and loads more. You can even write for the magazine if you fancy yourself as a bit of a journalist! Copies are available for free and we can send them straight to your house, or electronically to your inbox.

Get involved with our volunteering: We provide a number of exciting, creative and interesting volunteer opportunities, so if you want to get involved with us through volunteering, to enhance your CV, gain some new skills, get some experience, let us know!

Get more info online: Our website has loads of information for anyone aged 16+ that has a heart condition. Check it out, and all our news and info, at www.thesf.org.uk

University Life (with a heart condition).

An 18 year old member of Little Hearts Matter talks about starting university, and whether their condition has affected uni life. More posts to follow over the next three years!

Well, I’m done with 14 years of compulsory education!!!! Yet, I decided that I wanted to take my education further and get a degree in Welsh. Applying to Universities through UCAS was pretty easy. You basically put in your GCSE and AS Level grades, chose 5 universities that offer the course you want and applied for them. The difficult part was writing a personal statement, detailing your talents and experience. I don’t know about you but I find it really hard to write nice things about myself. So I wrote endless drafts… Luckily with a bit of help from my Dad and my teachers I managed to write an OK statement.

Once you’ve done all the applications you basically have to wait to be accepted or declined. Luckily, even though I hadn’t had the best results in one of the subjects I was applying for, I was accepted by Bangor, Swansea and most importantly, Aberystwyth!! (On the condition I got my grades of course). I did my best in all my exams and on results day, I realised I hadn’t got the grade in the one subject but had in Welsh. Aberystwyth changed the course for me and I accepted it as my first choice, it being my dream uni!! Nothing to do with it looking like Hogwarts of course ;)

But it does look a lot like Hogwarts...

So here I am, 2 months into the course, and I LOVE it!!!! The people, lecturers and social life are amazing!! It has been a little bit hard for me though. For a start, The University is on the top of the biggest hill ever!!! Bad planning on my part. However, the buses run frequently and the taxis are rather cheap. I do use my disability living allowance to pay for the taxis as an extra help. If you don’t receive DLA I’m sure Jon or Suzie can give you plenty of information!! Unfortunately, all my lectures happen to be right at the bottom of town so I don’t even have a chance to stay on campus. Ah well, I still love it here!!



The disability advisors at the university have been really helpful! They know all about me and have made provisions for everything. I get extra times in exams and also as my arms get really tired when writing, I get to use a computer in the exams. The disability advisors in all of the universities I applied for were really helpful. Swansea sent me a form to complete, explaining my condition and things that I may need to make my stay comfortable. Bangor gave me a call and asked questions again about provisions they could make for me. Aber didn’t do as much but now I am here they are very helpful and check up on me as often as they can!

So far, University has been an amazing experience, and hasn’t really been disrupted by my condition! As long as you make your university aware of your condition, they will do their best to make sure you feel comfortable as possible there.

Editor's note: UCAS have a page all about applying if you are a student with a disability: click here for the link. In many cases, provision and services for disabled students at university will be better than at secondary school, and it's always worth getting in touch with a university beforehand to talk about this. As Hannah mentions in her article, universities will always get back to you and make sure that they fully understand your needs, and explain how they may be able to help accommodate them. You don't have to wait until you're 18 to do this, and uni may be impressed with the organisational and initiative skills that you show by contacting them.

"My Life Story". Molly Rumble's speech to MPs in the House of Commons.

The following story was given by Molly Rumble, an LHM youth member, to dozens of health professionals and MPS at the House of Commons. She talked about her life so far, and highlighted areas that could be better if she got more support.

Molly and her family with the Chris Ruane MP, Chairperson of the All Party Parliamentary Group for Heart Disease.

Hello, my name is Molly Rumble and I was born on the 22nd may 1996 at East surrey Hospital. My parents had no idea that I had any heart problems before I was born. At birth I was a very blue but my mum was told this was OK and would pass in a few days.

When I went home I was a very quite and sleepy baby and mum had to wake me to feed me, which was a bit of a worry for her. As it was a bank holiday weekend the midwife didn’t come to see us for three days as she thought my mum was OK having had a baby before.

When she came in on the Tuesday she realised I was quite poorly and sent me straight to East surrey hospital. It was discovered that I had a heart problem although they didn’t know exactly what so they sent me by ambulance to the Royal Brompton hospital in London.

My doctor at the Royal Brompton was Professor Reddington who discovered that I only had one pumping chamber working, a blocked valve and a large hole in my heart. I underwent my first major surgery that night at 5 days old and I had a BT shunt fitted. The doctors were very worried about me and told my parents that they didn’t know if I would survive.

I had a very swollen brain and a stomach condition called necrotising enter colitis, which meant my bowel, was dying. They warned my Mum and Dad that I might be blind, have mobility problems and learning difficulties. I spend 9 days in intensive care and 4 weeks altogether in hospital before I was allowed home.

As I grew up I underwent 11 more surgeries including 3 major ones, the most recent being a TCPC. I have to take medication every day including warfarin I have to test my blood regularly at home for this.

In the summer of 2008 I had been feeling quite unwell for a while and my cardiologist, now Dr Daubeney decided that I should have an MRI scan. During this scan I was given some medication, which made my kidneys go wrong and my potassium levels rise.

I was rushed into intensive care and then transferred to Great Ormond Street Hospital where they found I was in chronic renal failure and they found that my kidneys had not developed properly. This was a very scary time for me I now take medication for this and I have to be careful what I eat and drink.

Over the last 16 years I have spent lots of time in hospital and going to outpatients appointments which has meant I have missed lots of school. I find learning very difficult and need lots of help with this. I am due to take my GCSEs this summer English, maths and science. I find school very tiring and have been on a part time timetable since year 7. I am due to go to college in September to take a foundation course, which is very exciting.

I have 2 very good friends in who help me at school and know when I go out I have to sometime use my wheelchair depending on how I long I am out for. They are very understanding however; I have found school very tough in places, as not everybody understands the effects of being a heart patient, as it doesn’t always show.

Travelling to my hospital appointments has always been a very tiring experience for me as all my hospitals are in London which mean long journeys either by train or car and has also meant I have missed lots of school and now college.

The best thing about being a heart patient was when my sister organised a wish for me and I was taken up to London to the millennium hotel where I met JLS and then went to their concert at Wembley. This was an amazing day one I will never forget and kind of made up for all the treatment I have had to have.

I know that in the future I may need a heart transplant but I try not to think about this too much. I would love to have a job with animals, but I need to finish college first.


By Molly Rumble

How the LHM Open Day 2012 went down.

Stephen Ayres is one of LHM's volunteers, working as a youth leader at our Open Day. He enjoyed last year's event so much that he thought he'd write an article about it. Our next Open Day is coming up on Saturday 2nd March, so why miss out?

Hi everybody, Stevie from the Open Day here. I met Jon in my halls at university and I live with him now. He had talked about LHM a lot since I'd met him and when he invited me to get involved with the open day, I was really keen to, especially after meeting the other volunteers.

I've been mentoring school pupils while at university, which has made me realise that I'd love to be a teacher, and the open day added to this feeling - although I don't think most kids would be as nice and polite! I thought that it would take a little while for everyone to get to know each other but new friends were made as soon as people began to arrive.

Rumours that Jon was going to dress up as a clown for everyone were sadly not true, but he did bring along some aubergines which helped everyone to learn some new names as we tried to put them back together. Our group even gave ours a nice new face.

The main aim of the day was to talk about bullying, and to put together some short plays involving a boy or girl dealing with bullies. I was in charge of the 10 and 11 year old group and the only problem was cutting down so many good ideas into a short play - I'm sure that was the same for everyone.

We were all a bit nervous when hundreds of parents came in to watch but every group did a great job - I think we discovered some hidden acting and directing talent. I'm sure anyone who saw the plays would agree that our group had the best dance moves as well!

“I thought that it would take a little while for everyone to get to know each other, but new friends were made as soon as people began to arrive”

As well as meeting lots of new people and putting on three great plays, everyone learnt some really important lessons about bullying and how to stop it. We had a great session with John from ChildLine and some group discussions about bullying and heart conditions. It was good for everyone to learn ways of dealing with the problems, whether they're over the internet, face to face at school or anywhere else.

If you came and made new friends, I hope that you are able to keep in touch through LHM. I’m sure that you could email Jon - jon@lhm.org.uk - if you’d like to get in touch with someone from the Open Day. Sadly, I'll be away for next year's event, but I look forward to coming back some time and meeting up with all of you, who made the day such good fun!

LHM Open Day. Meet other teenagers with a heart condition like yours.

Every year, Little Hearts Matter has an Open Day, and families from across the country all come together to one place. Everyone there either has a heart condition, or knows someone that has a heart condition, so it is a fantastic opportunity to meet other people who know, first hand, what it's like to live with a single ventricle heart.

This year, the Open Day will be taking place in the West Midlands, here are the deets:

Date: Saturday 2nd March
Time: 09.00-16.30
Place: Bethel Convention Centre, West Bromwich, B70 7JW
Who can come? Little Hearts Matter members (and their friends/family)

You'll need to be a member of LHM (it's free to join, just email info@lhm.org.uk). There are special sessions for 10-25 year olds, and this year we have a jam-packed programme that will look at moving to secondary school, and moving to adult hospital services. We've got experts to come along and speak, and you can ask them any questions that you like.

The best thing about the day, though, is being able to talk to loads of people your age who have a single ventricle heart condition. Every year we get loads of new faces, and everyone is really friendly so you feel right at home straight away. You can talk about stuff that annoys you, like people staring at your scar, and also share some useful tips. If you want more info about the day, either email jon@lhm.org.uk or click here. REALLY hope that I see you there :)

Life so far. Hannah Palmer's story.

"I now want the younger people to have the opportunity to have the chances that I have been given by Little Hearts Matter and everyone who has supported me."

Hi, My name is Hannah Palmer and I'm 17 years old. My parents were told that I had a major heart defect only six hours after I was born. They were told that I only had half a functioning heart (and a few other long words) and also that I would have to have surgery in the future. I have had two major heart operations, one when I was just 15 months and one at age nine. I've also have had several catheterisations. I may need to have other operations in the future and there is a possibility i might need to have a transplant in the far future.

Growing up with a heart condition has been quite challenging especially throughout school. My P.E lessons were always hard because the teachers didn't understand my condition and it was really hard work trying to explain to them that I couldn't do as much as the other kids and that I couldn't go out in the cold in shorts and t-shirt. Eventually, I decided that dropping it altogether was the best option. Another thing that is hard in school with this condition is that at certain times i find it hard to concentrate if I'm tired , stressed or if I'm having a harder day than usual. Exam times are particularly hard because there is a lot of pressure from teachers which causes more stress than we particularly need.

Even though my school life has been a challenge at certain times, I threw myself into activities that I could do. I have starred in several of my school's shows and I am a part of the school's orchestra and choir. Outside of school I attend a theatre school, and at the moment I am playing the lead. I have also found a new vocation... public speaking, having given a speech in the House of Commons to make politicians more aware of congenital heart disease and its effects on behalf of LHM and its members.

Speaking of Little Hearts, I don't think that I would be who I am today if I hadn't met the wonderful people like Suzie and Jon, who make the charity work. The charity has helped me to meet new people with conditions like mine through various events and it has been amazing to be able to talk to people who understand what I am going through. It's also nice to hear about other people's conditions and their issues and it's great to know that we can all give each other valuable advice. Having the chance to talk to people who understand is an amazing asset. It has helped me greatly in dealing with my problems and I want younger members of the charity to be able to have that choice.

An amazing way for the younger members to voice their problems is to talk to a member of the Little Hearts Matter Youth Council. The Youth Council started in 2009, and was put in place to make sure that the children of LHM had a say in what we want the charity to do. The Youth Council have already made a video voicing their problems and how they have dealt with them to help future members that is available to all members. One thing we hope to achieve is to make the young members more aware of the new and improved Little Hearts Matter Facebook page and for them to talk to other kids with heart conditions on there about experiences or just for a friendly chat.

Another thing that the charity would like to do is to arrange a weekend away for the 14+ (without parents) where we could talk about things such as DLA, money management, cooking and transition to adult hospital. Talking about this kind of stuff away from parents - with other teenagers in the same situation - is important because it allows us to have independence which is important for us to be able to grow up and to understand more about living in the 'adult world'. Having independence for me has been an amazing experience. Due to the fact I receive higher rate disability living allowance, I was able to begin driving at 16 and I passed my test 2 weeks after my 17th birthday. I also was able to apply for a car through Motability which has been a major help as I am now as independent as I can be. Having these facilities available is a wonderful step towards this independence even though they are at risk of being removed in the new Health and Social Bill going through parliament.

Having a major heart condition hasn't had too much of an effect on my daily life. In some ways it has made me have a better outlook on life. I now want the younger people to have the opportunity to have the chances that I have been given by Little Hearts Matter and everyone who has supported me. I want to make a difference to their futures.

Thank You :)


Hannah Palmer

News, articles and stories from young people with heart conditions.

LITTLE HEARTS MATTER PRESENTS...

The ZipZipper blog!

This is a new blog from LHM, and it will feature articles from teenagers with a heart condition. Anyone can get their posts published by emailing them to jon@lhm.org.uk

So, get writing!
Jb