LHM is going to be on BBC.

Hey ya'll. So, big news... LHM are going to be on TV! It's a programme on the BBC called Lifeline, which helps charities to raise awareness. The film crew visited Hannah Palmer, one of the oldest members of LHM, and she's written about it for you here...


On Monday 25th March, The BBC came to my house to film me and my family for the Lifeline Appeal, which is going be broadcast later this month.

They had spoken to me previously to ask me questions about my condition in preparation for filming so I had a bit of an idea about how the day would go. Amy, the Producer, and the cameraman, Alex, arrived at about half 10 in the morning. They were laden with Tech, including the huge camera they would use. They then gave me a run down of the whole day: I’d be interviewed first, then my parents, then I’d be filmed in different situations.


The set up for my interview lasted around half an hour as they organised their cameras and lighting, and then I started my interview. It was a ,really weird experience, I had quite a big camera and a really bright light pointed directly at my face. Amy said that I shouldn't be nervous and told me that I wasn't supposed look at the camera. Basically the interview was just like a conversation between me and Alex, while I ignored the camera.

The questions were the typical questions people ask about my condition, but there were some of them that really hit the emotional aspects, such as mortality and feelings. When they interviewed my parents, it became even more emotional because I felt like they were telling me about how they discovered my condition for the first time.

We then had an hour for lunch where we could relax, and then it was on to filming the action shots. They filmed me writing essays on my laptop, looking out the window to the street and then took me to the park behind my house to get, in my opinion, a more picturesque shot, so they could show how I get tired walking up a hill and how cold I can get.

Finally, they had a look through some of my baby photos. I'm pretty nervous about the show going out, but it's awesome to raise more awareness for LHM and children with half a heart.

Stopping bullying, making new friends, and getting more involved with LHM.

Ben Hall has been a member of LHM's Youth Council since it began, and works hard to raise awareness about congenital heart disease and the difficulties that might arise from it. He supports younger children and uses his experience to help with projects to create information tools. Here he gives some tips about bullying.

Over the years I have been to lots of Little Hearts Matter events: award ceremonies, youth council meetings, open days, DVD filming workshops, and much more.

Ben chats to Baroness Howarth, Patron of LHM.
As you start to do more, you get to know more of the older members and staff who are all really friendly. You even meet the people in charge of the charity, like the trustees and the chairperson. It's really easy to get more involved as well, for example you can join the Youth Council and Facebook group, which is so much easier than writing or waiting till the next Open Day comes around.

You could also text people, for example I text Evie, another LHM young member and youth councillor, after we met at an LHM event. Because she lives in Cornwall and I live up north in Chester, texting is so much easier than getting the train or writing, mainly because it’s cheaper.

As the years have gone by, LHM have started to concentrate more on dealing with bullying, which is good because it helps me and everyone in secondary school come over the fear of being bullied, and it helps them to deal with bullying. In my own experience I have never been bullied. Yes, I have been called names but I just turn around and say, ‘Yeah, so!?’, that way they have no idea how to respond and the “bully” just walks away. If bullying becomes a real problem, it's best to talk to a teacher or your parents. You might think that you are being a grass, but if someone is a bully then they don't deserve to be protected.

At the last LHM Open Day we learnt that all schools have to have an anti-bullying policy, it's the law. If you don't want to talk to your teacher or your parents you can email jon@lhm.org.uk or you can call Childline on 0800 1111. Jon has lots of experience talking to children with heart conditions and young people that are being bullied, and Childline is completely confidential and available 24/7.

Childline offers a confidential, non-judgemental service. The number is free and won't appear on your bill.
Making new friends is always hard, and I can understand how hard it is to get to know new people when you’re young, however its really easy in LHM because you have something to relate to with all of the other kids. So if you don’t know how to introduce yourself just go up to someone who you don’t know and say ‘I have hypoplastic left heart syndrome and a pace maker, what heart condition do you have?’ it works every time (of course if HLHS isn’t your heart condition then just say yours instead!) You can’t really try that at school as you may get a few weird looks, but in LHM everyone has a heart condition or knows people with heart conditions so it’s completely normal.

Hope to see you at the Open Day on March 2nd!

Editor's note: Nobody should have to go through bullying, everyone has the right to be happy and safe at school. Bullies pick on any little thing that makes someone different to other people, and that means that sometimes bullies pick on people's heart condition. We know that lots of young people can feel really negative about their heart condition because of this, but it's important to remember that if it wasn't your heart condition, bullies would pick on something different. Everyone's different, there's no such thing as normal, and your heart condition is just a part of who you are.

It also shows that you're incredibly brave and strong, you've come through multiple open heart surgeries! If you find that you're feeling down on yourself or sad about your heart condition, then please get in touch by emailing jon@lhm.org.uk or calling childline. You can also speak to a childline counsellor online through their chat service. You don't have to go through it alone. Click here for the childline website, where there is lots of information on bullying, including how you can get it stopped.

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