Feel Good Friday

Hope you all had a great Christmas full of yummy food :) Enjoy Boxing Day!

Feel Good Friday

Only 6 sleeps until Christmas!

Feel Good Friday

Christmas is nearly here so it's only appropriate that we have a Christmas themed Feel Good Friday! 

Which cat best describes your feelings about Christmas being nearly here? 

Feel Good Friday

A special Feel Good Friday today as one of our young members, Colbie-Kate (12, PA) 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.)

Colbie-Kate has written a great blog about why young people with half a heart should celebrate who they are and be happy.

"Just recently I moved to secondary school where I had to get an electric wheelchair because the school's just so big. I never had to use a wheelchair in the past, so it was hard but I wanted a good education. Yeah, people were mean, but I told someone and it was sorted, and now I am in Secondary school and yeah, it’s strange, but it’s what’s going to help, and I’m proud of myself for giving in and using it, but now it feels normal. "

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, Evie (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.)

Evie has written a great blog about her life with half a heart - she talks about her hopes for University, having a social life, keeping up with friends, telling people about her condition, and why she's grateful for her handmade heart.

"Having a handmade heart obviously has its ups and downs when trying to live a normal lifestyle. Being a teenager I of course love to socialise and especially enjoy a good gathering with my girls. But of course I have limitations unlike my friends. I do find it hard when I see my friends drinking and knowing that I can’t join in to the extent that they do it. But I also find it absolutely hilarious watching them throughout the night when I’m the only sober one."

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, Sarah (21, 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.)

Sarah is a singer songwriter, who would love to travel and see the world. She talks about growing up as one of the oldest people with HLHS and the many hurdles she's had to overcome. Make sure to check out her YouTube channel - SarahAndTheRedGuitar!

"Life is tough for anyone these days.  I am nearly 22 and for 20 of those years my family and I have had the support of Little Hearts Matters.  I have been proud to represent the charity on many occasions, including the House of Lords and have even been on local TV on the politics show.

When I was younger I felt very much alone with my heart condition but then when we went on the activity weekends with LHM I realised I was not alone. There were other children with scars like mine! My parents have the motto “Take each day as it comes and live each day to the full” – I have every intention of doing that!"

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, Amy (15, 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.)

Amy is at secondary school studying for her final year of GCSEs. In the latest Handmade Hearts blog post she talks about early life with half a heart and how she copes at secondary school. Thank you for this lovely contribution Amy!

"I am now studying my GCSE final year and although I do find some subjects, particularly Math’s and Science, hard, it isn’t all bad.  I do have to be careful not to do too much and sleepovers and parties are rare but I have great friends and a loving family around who I know will always support me (whatever happens).  My future is uncertain but I know that the Doctors are amazing. Good advice is to take each day as it comes and live each day to its full!"

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, Hannah (20, TGA and DIOLV) 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.)

LHM trustee Hannah Palmer has written a blog post about how growing up with half a heart has made her who she is today.

"Being a part of Little Hearts Matter has made an amazing impact on my life. I’ve met some amazing people, who I’m pretty sure I’m going to be friends with for life, I’ve learnt a lot more about my heart than I learnt from the Doctors and they’ve given me so many amazing opportunities. Because of them, my Dad and I carried the Olympic Torch, I spoke in the Houses of Parliament and this March they, the members and people in charge, gave me the most amazing opportunity. They elected me to become a Trustee for the charity, the youngest and only member with a Heart Condition and I am going to make them all proud of me."

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, Jack (20, 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.)

HLHS hasn't stopped Jack from opening his own business, winning a Young National Campaigner of the Year Award and raising thousands of pounds for LHM. Jack talks about how he hasn't let his condition define him, and how life is what we make it.

"Turning 21 and enjoying life to the full, I always think about this: life is what we make it. It’s our own decision to choose what and who we want to be. Life is tough, and for people like myself, it’s a little tougher. Yet I choose that my condition won’t get in the way of what I want to do."

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, Lucy (16) 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.)

Lucy's school have been extremely supportive in accommodating her needs and making her feel as comfortable as possible. She talks about what it feels like to be a 16 year old with half a heart and how her school have helped her along the way.

"There are many ways that my heart affects my everyday life. Sometimes I feel as if I’m on a see-saw, trying to balance my lifestyle just right. I am 16 years old, entering my final year of school and doing my GCSE’s, so I thought that I would reflect, and tell you about my life in school.

When I changed from primary school to secondary school, it was a big shock to the system. One difference I found was actually having to explain my heart condition to people. That was one thing I never had to do in primary school, as it was in a small village and everyone just knew. However, when I entered first year, everyone wondered about me. People noticed that I had a classroom assistant, and I stayed inside at break and lunch. I remember the first break time, a lot of other students came up to me and nervously asked why I was different. I tried to explain it the best I could, but it was something I’d never experienced. On a lighter side, I did get some funny replies. One girl picked up on the ‘half a heart’ phrase and she asked me, ‘Can you not love properly?’ You may get some shocked and confused responses, but some people do make it seem funny, and over the years your peers get used to it."

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, Sophie (17, 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.)

Sophie was born with Hypoplastic Left Heart Syndrome, and has written about becoming more independent and setting her own limitations, as well as being stubborn when people try to tell her that she might be able to do things because of her condition. Sophie is hoping to go to University next year and study Psychology. 

"When people say, “Tell us something interesting about yourself”, I often wonder what their reaction would be if I were to say, “I have half a heart”… So, what’s it like living with a handmade heart? For the most part, it’s absolutely fine- I just get on with every- day life, and often forget that there’s something wrong with my heart. The main things I have to keep an eye on, is strenuous activity and the cold.

There are certain times when I feel worried or get upset about my heart. Every so often, there are situations where I may not be able to do something, for example go paintballing with my friends, or get my ears pierced. Although on the grand scheme of things, these are minor things to get upset about, it still hurts. "

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.

Winter Warmers

The weather has really turned this weekend! We have been so lucky over the summer but it looks like it is time to get the winter woollies out. Keeping warm when you have only half a heart is always a challenge. Over the years, the LHM team have collected together lots of tips that may give you ideas to keep warm. 

Poor circulation (movement of blood around the body) and an inability to exercise to keep warm cause problems when you have a single ventricle heart condition. Often your feet and hands feel like ice and your lips go blue very quickly when the weather is cold.

Pile On the Clothes.

Lots of thinner layers are better than one thick one, as they trap and warm air. Go back to buying vests; lots of shops have good thermal ones! Put tights on under trousers and put socks on top. Yes even you boys! Batman wears tights! Find a hat with earflaps and nice thermal gloves. Try the local ski shop, they have gear especially designed for very cold weather.

Warm Up From the Inside.

Have hot cereal for breakfast; warm the morning drink of milk. Make hot chocolate or tea for snack time. Have soup with a sandwich for lunch and plan warm snacks throughout the day. Remember that you need food little and often so you'll be helping your diet and keeping warm.

Cover Those Noses.

Remember scarves or a balaclava can help keep those noses warm.

Snug in Bed.

Onesies with extra socks can help when the duvet slips. If it's really cold, think about using a sleeping bag.

Sore Lips.

Prevent sore lips by using lip balm or simple Vaseline.

Runny Noses.

If a runny nose persists, talk to your parents about getting advice from your health visitor or the GP. It might develop into an infection.

Useful Products

Click here to go to LHM's Useful Links page, which contains details of products for keeping warm which you may find useful.

Remember to send us any new ideas and tips and we will highlight them with our other young members!

Feel Good Friday

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

Feel Good Friday

Well, it's back to school next week for most of you, so how about a school related Feel Good Friday?

Feel Good Friday

It's another special Feel Good Friday, with pictures from our youth activity weekend last week to share with you. Enjoy!