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Feel Good Friday

A special Feel Good Friday today as one of our young members, Ben (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.)

Ben has written a great blog about what life has been like for him living with half a heart, taking a different path to his friends, and what he has achieved with his handmade heart.

"I sailed through my GCSEs no problem, but then A levels hit me and they hit me hard. The change in work and social expectations was tougher than I’d thought. I ended up re-doing my first year of A levels and it worked out a lot better: I fitted in the year better and the change of subjects was also a nice change. My results weren’t great though and I realised that perhaps A levels just weren’t for me. So I have now moved to West Cheshire College to study a BTEC Level 3 in Health and Social Care. It’s been a big change, going from a small school were everyone knew me, to a huge college were no one knows me. It’s full of strangers who walk past me in the corridors. No “Hi, Ben!” here, and there are only a few people who know anything about my heart condition. It was a new beginning; I was just another person on the course and it’s my chance to show who I really am."

Click here to read it in full.

You can help LHM to continue supporting children and young adults with half a heart you can support us by sharing our young members stories. To donate to LHM please text HELP22 followed by a £ and the amount to 70070.

Feel Good Friday

Feel Good Friday

Feel Good Friday

Happy New Year to all of our readers :)

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.