My Handmade Heart

As part of our Handmade Hearts series, LHM's young members talk about life with half a heart. To learn more about Handmade Hearts, click here.

Dillon (10, HLHS) talks about his journey with half a heart, and what he'd like to do when he grows up. 

"I sometimes get very frustrated with my heart condition, especially when it stops me doing things and it makes me tired. I get annoyed with having to have blood tests and people asking about my scars. But mostly I’m OK with having a special heart.

When I grow up as a job I would either like to be a Ski Instructor – because I enjoy Skiing and I’m really good at it, or a designer for Lego so I can invent new Lego sets and spend my days building Lego. I would also like to be an actor and would love to star in a Star Wars movie."

Click here to read it in full.

You can help LHM to continue supporting children and young adults with half a heart this October by making your very own #handmadehearts. For more info on how to get involved click here. Make, Bake, Sew and Sell for children with Handmade Hearts. To donate to LHM please text MADE14 followed by a £ and the amount to 70070.

Feel Good Friday

A special Feel Good Friday today as one of our young members, Ryan (17, TA) has written a brilliant blog post for LHM about what it's like having half a heart. (As part of our Handmade Hearts series, LHM’s young members talk about life with half a heart. To learn more about Handmade Hearts, click here.)

Ryan was born with Tricuspid Atresia in 1997. He now plays in a rock band called Memories of Shadows and has written a blog post for us about the importance of following your dreams, no matter what life throws at you. 

"I’ve found my dream: playing bass guitar in an original hard rock band. When I left school I went to Walsall College to study music performance. On the first day we were there we had to get on the stage and perform Vertigo by U2. I was scared since I’d never performed before; I thought I was going collapse but soon as I started I felt great. Now I don’t really have a fear of performing, I think it’s great. I’ve finished the first year of college with a double merit which is good. I also joined a band; we’re called Memories of Shadows and play original hard rock. We just had our first gig, opening for a couple of bands at the 02 Academy in Birmingham, which was an incredible experience. It went really well for our first gig together; I felt no pressure and didn’t feel ill. I was living my dream and my heart had no problems with it. We’ve got a few more gigs coming up and I’m really looking forward to them."

Click here to read it in full.

Diary from another LHM Youth Weekend

One of our young members, Dylan (10, HLHS) wrote this diary for our 10-13s Youth Weekend that he came to in August at PGL Tregoyd.

 

My first day was mostly spent travelling. We live in Scotland , so it took 3 trains and 7 hours to get to Hereford . From Hereford it was a bus to Hay-on-Wye and then a lift to the PGL centre.

When I arrived I met the other kids and we were shown where we would be sleeping. I didn't know any of the other kids there but we soon all started to get on and played some games and we all watched a film together.

Day 2: when we woke up  we played for a while and then went downstairs for breakfast. I had sausages toast and cereal. After breakfast we went to abseiling and archery. 
Abseiling was fun at the start but going down the slope was a wee bit scary. The archery was great and I really enjoyed it. I had tried archery before so was pretty good at it. 
When we finished archery we went to the canoes. I wasn't so sure about the canoeing and I felt a bit sick as it was quite bumpy. After the canoeing and archery I started  to get to know the other kids and we messed about In our rooms. The other boys were the same age as me so we all got on really well.

Then we had dinner and I had a hot dog.  After dinner we got to buy sweets and then we watched Despicable Me. Then we went to bed and messed about for a while.

Day 3: in the morning I had breakfast, and I was quite tired as we were busy all day and talking at night time so it was good that we  had a fun session where we did puzzles and games. Then we packed our bags and got ready to go home. My mum came and I had to go but the other kids got to stay because they didn't live so far away. I had a great time and hope to go again.

The best bits about my PGL camp was the archery and abseiling and also meeting other kids. I have stayed in touch with a boy I met which is cool and we text each other quite a lot. 

Feel Good Friday

Another special Feel Good Friday this week, as one of our young members Grace (9, HLHS) sang in Liverpool One, joined by a choir of around 800 people. Grace sang "Lean On Me" and is absolutely knock out!

You can watch Grace's brilliant performance below.

(To read the news article, click here)

The Ups and Downs of Living with Half a Heart

As part of our Handmade Hearts series, LHM’s young members talk about life with half a heart. To learn more about Handmade Hearts, click here. 

Carys (18, DILV) describes the ups and downs of growing up with half a heart, her aspirations for the future and how LHM has helped her on her journey.

"I was born in 1996 with Double Inlet Left Ventricle, Hypoplastic right ventricle, hypoplastic aortic arch and Transposition of the Great Arteries. At four days old I had my first of four open heart surgical procedures at the Birmingham Children’s Hospital, where I received care until I was 16. This was when Surgeon Mr Bill Braun crafted my ‘handmade’ heart. 

My first three operations were as planned – my Fontan circulation was completed in 2001 and I was lucky that all of my first three ops went well and I recovered pretty quickly.  However, at age eight I went into hospital for a cardiac catheter for a partial fenestration closure, only for Dr Wright to find a large blood clot in my pulmonary artery.  A two night stay turned into over two weeks and full-blown open heart surgery.  I wasn’t impressed – although skating up and down the ward on my drip stand a few days post-op nearly made up for it. Looking back I was so lucky that the catheter happened when it did – if that clot had broken up it could all have been very different!"

Click here to read it in full.

Feel Good Friday

A special Feel Good Friday today as one of our young members, Andrew (18, HLHS) has written a brilliant blog post for LHM about what it's like having half a heart. (As part of our Handmade Hearts series, LHM’s young members talk about life with half a heart. To learn more about Handmade Hearts, click here.)

"If there’s one thing that frustrates me about having a handmade heart, above the tiredness, above the fact that I can’t keep up in sports and above all the guinea pig stuff, is when I look at people who have a regular heart and I see them wasting their life away. Life is so short, and whether you have a handmade heart or not, live your life! Don’t waste your time worrying about what people may think or say about you, because every second spent worrying, is time that you can never get back."

Click here to read it in full.

Diary from an LHM Youth Weekend

One of our young members, Amy (15, HLHS), wrote this diary for our 13-16s Youth Weekend that we had in the middle of August.

Day 1: When We Arrived

I was very scared on the drive up to PGL. Luckily I did have my brother, William, with me so that made it a little better! When we arrived there was only one other boy there called Alex – he must have been there a little while before us (basically because the M25 was a complete nightmare) but he seemed really nice! I then met Laura who was really kind and helpful (which she was throughout the whole weekend) and also Suzie – which I hadn’t seen in ages! So that was lovely! Then I learned that I was going to be the only girl for the whole of the weekend (that made me feel a little worried – but not for long as I fitted in just fine!) We then met Maddie – our group leader for the weekend – she was lovely (really everyone was). Then everyone else started to arrive – our group was me, William, Alex, Ben, Connor, Alisdair and Ollie. We all basically got to know each other that evening while playing Robot Wars, it was really fun but I must admit a bit random! It was a great laugh and a great chance for everyone to work together and just have a laugh dressing a team member up in cardboard and just having a great laugh – after that we played table tennis and cards and just chilled till bed!

Day 2: First Day of Activities :)

We had to get up by about 7:45ish (was really sad because I normally don’t get up until at least 9) but I was surprisingly the first out of our rooms! The first activity was Archery – which was after a very good breakfast! It was really fun because although most of us had done it before it we were able to do lots of different skills with the different bits we did through the hour and a half activity. The second of our activities was Survivor with Maddie :) It was really fun learning ways to survive in the outdoors and starting fires with just a blade and your foot! It was really cool building the shelter as a team as well – it just made you feel better when you saw the end product.

We then had lunch – food is always good :D We then had Abseiling, which was really, really fun and although some people were scared and didn’t manage to do it everyone was very supportive no matter what stage you got to on it. I went down 3 times and each time I got more confident which was really nice! Everyone was so smiley when you looked down so that was really nice! We then did our final activity of the first day, Sensory trail – it was a great laugh, well us kids did the sensory trail and finished first but we kind of left all the adults behind and then when we completed it we went back and tormented the adults making it harder for them to complete then it already was. I think, for me that was  the most fun that I had all day (not just cause the adults were blind folded) just cause us kids all worked together and just laughed and made each other laugh (and although it shouldn’t have been that funny it was because we all just worked together!) In the evening after dinner we did a campfire which was really chilled and nice because we could just chill out listen to music eat and toast marshmallows and of course play CHUBBY BUNNY!!! Then we watched Men in Black 3 which was really funny.

Day 3: Final Day :(

We all slept very well that night and we were ready for the activities ahead that day. So the first activity was Nature Trail. It was a really nice activity to get the day started. We went through all the woods spotting different trees and learning about tree growth – it was very nice and formal! Then we did a squirrel count to end with (which I hate to say I was rubbish at that :( ) but was still really good fun! Then we did problem solving which was really fun because again we had to work as a team to get all our ideas out there so that we could solve all the problems like making a football go through a maze without falling off (harder than it sounds) and also balancing a board with all 10 of us on it! 

Then we had lunch (fun times)! Then we did first aid where we learnt CPR and the recovery position which we are now trained to do. It was really fascinating learning all about it and I’m pleased that I can now do it on someone to help them. We then did tunneling – now I really wasn’t looking forward to this activity but I did do it and although it was really pitch black (couldn’t even see your hand in front of your face) and muddy it wasn’t that bad – but I didn’t go through it again but I think the boys enjoyed it! 

Then it was time for the last supper :( (literally) and to wait for our parents to come. It was such a fun weekend and I enjoyed meeting everyone and leaning about their heart conditions and how it has affected them. I really hope that there is another activity weekend like this really soon!

Transition Event

At the end of August, Suzie represented the charity at a cross London event organised by the GOS, Brompton and Evelina/St Thomas’s team to help their patients  beginning the move from Children’s to Adult services.

Transition is for some a worrying time. Making the move from the team that have looked after you since you were born to a completely new team can be very daunting for the young adults as well as their parents. The Transition Event was created to help young people understand what moving from one service to another is all about and to explore issues about living with a congenital heart condition. Many of the units also hold their own transition events where their young patients can find out more about their own unit and meet the adult cardiac team who will be looking after them. 

This was a new event, hosted by the British Heart Foundation, where lots of the national charities as well as the charities that work at the three London hospitals were invited to let young people know about the services they provide. I was there to talk about the Zipper Zone Youth group which young LHM members from the age of 10 upwards can join. I had copies of our newsletter and our new Youth stand which one of our youth members, Luke, helped us create following his work on an art project.  It was great to meet the teenager and some young adults and chat to them about the challenges that they face. Some of them gave me their details and will be joining the youth group which is great.

There were also lots of other organisations there highlighting different services and support. Prospects – careers advise, Beat Bullying and Changing faces helping people talk about their scars.

Thank you to the teams that invited us to attend it was a great opportunity to talk about what we do.

Feel Good Friday