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.

Stuff you should know...

Hi everyone,

LHM is lucky because we have super intelligent teenagers who always talk to the charity about what we should be doing. They are complete experts, because they have lived (and are living) through their teenage years with a serious heart condition. That means that when something screws up, they can think about how it would have been better. They think about this stuff and get in touch with each other and LHM to see if together we can make life better for younger people.

Most recently, some of the teenagers that have made the move to adult hospitals (this is sometimes called 'transition'), got together and wrote a list of stuff that they think teenagers should know about their heart. The way that they looked at it, if parents and doctors and LHM talked to young people gradually over lots of years, it will make the whole move into adulthood smoother and easier, with no nasty shocks down the line.

So, here's their list. It's not just about what our Youth Council thinks though. If you disagree, or you think that maybe something should be added to the list, then just comment on this post or email us :)

Parents, if you're reading this, we'd love your thoughts as well!

Age 12
1. General information about our conditions. 2. Talk about high school exams (getting extra time etc.) 3. What to do in case of an emergency. 4. Learn our limits. 5. Know that transition will happen in a few years. 6. Learn the names of our tablets.

Age 13
1. Learn what each of our medication actually does.

Age 14
1. Learn the effects that drugs and alcohol can have on our bodies and hearts. 2. Start to talk about relationships. 3. Start to talk about transition in more detail.

Age 15
1. Be prepared for workload to increase massively with GCSEs 2. Talk about sex in detail, including how anything to do with our condition. 3. Talk about contraception, different options for girls. 4. Talk about problems with sex (for instance STIs) 5. Talk about realistic future careers and education options.

Age 16
1. Know everything that there is to know about transition and how it works 2. Talk about driving, whether you can learn early an if you can get motability. 3. Know fully how we can be affected by not keeping to our limits.

Age 17
1. Learn about becoming an adult. 2. Learn about what will be legal/illegal 3. If going to uni/college learn about our limits, and what support is available to us there. 4. More mature relationship information. 5. Learn about the implications of the condition and its effect.

Age 18
1. Should be a complete expert in your own condition. 2. Know all about career options.

So...what do you think? I think that we can continue to add to this list until we have a really complete guide of stuff that you should know. It could become a bit of a checklist of stuff to talk about with your parents. Thoughts in comments please!

Update from fundraising legend Colbie Kate!

You might remember that a few weeks ago Colbie Kate wrote an article talking about how she ran a cookie back in her school to raise funds for Little Hearts Matter. Well, she's got back in touch to tell you all the amazing outcome...

Hello, I wrote to tell you about the fundraising events my school had and that I would tell you the total raised.

I would like to thank my school for letting us funraise. In total, we raised a huge...£146! I can't believe that we made that much money!

Thank you for reading.

Colbie Kate

How the heart works...

The internet changed everything when it came to publishing. It's now easier than ever to share your thoughts with hundreds, thousands or even millions of people.

This also makes sharing information really easy, which can be both a good thing and a bad thing. Unfortunately, for every great, accurate article out there, someone has written a load of trash that just doesn't make sense, is outdated, or completely incorrect. All of us still have this weird sort of in built respect for anything that is written down, and so sometimes we just accept any old nonsense because someone bothered to write it and publish it.

I think that we all need to be a bit more careful, and make sure that what we're reading is accurate and up to date. Little Hearts Matter just got something called "the information standard", which is only given to websites and organisations who know what they're talking about. You can check out www.lhm.org.uk and see all of their information.

I also like the website "how stuff works" because it has lots of interesting articles, is easy to read and it's written by professionals at the discovery channel, so it's fairly trustworthy. I thought that I'd share with you here their article on the human heart, which is excellent. It's important to understand how the heart works so that you can understand how the operations have helped to keep your heart working as well as possible. Anyway, here's the link:

http://www.howstuffworks.com/life/human-biology/heart.htm

"I wanted to eat the whole plate!"

Today's story comes from Colbie-Kate, a young member of LHM, who has been working hard to funraise for LHM.

Hello, my name is Colbie-Kate and I am 10 and I have Congenital Heart Disease. Throughout February my school will be fundraising for Little Hearts Matter and I thought I would share with you what we will be doing.

On the 15th February we had a cookie bake; we will also be doing it on the 22nd February. Everyone really enjoys when we sell them. I really enjoy fundraising for Little Hearts Matter. I went around 5 classes and asked if anyone had anything they would like to comment. Here is some of the stuff they said...


"It was lovely"


"I wanted to eat the whole plate!" (of biscuits)


"Really nice!"

Thank you for reading and when I find out how much we raised I will try my hardest to tell you what the total of money raised is.

Thank you,
Colbie-Kate

Teenagers made a video about their heart condition, it took a while...

These are just the bloopers from our video, to check out all the other parts of the DVD (like professional interviews and the main video!) click here and pick what you want to watch from the "I've only got half a heart... understand me?" section.

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.