We are so excited to share with you our 2019 Brave Heart champions. These LHM youth members have worked hard, learnt about their condition, spread awareness and raised funds for Little Hearts Matter.

Amelia, Ambassadorial Award

Amelia lives with half a working heart and took the brave step of using Little Hearts Matter’s ‘Summing it Up’ education pack to create a presentation for an assembly for Year 3 so that she could educate and inform her peers and teachers about her heart and how this impacts her day to day life. Amelia adapted the presentation and added photographs herself, made sure the presentation was interactive and even did more research so that she understood more too! During this assembly she confidently spoke about Little Hearts Matter and her personal experience which is an exceptionally brave thing to do.

Following on from this Amelia and her friend submitted an idea to her headteacher that students could pay £2 to come to school in their pyjamas and the money could be donated to Little Hearts Matter. Amelia raised an amazing £185 doing this.

Amelia’s teacher said, 

Amelia passionately shared her story and raised awareness of Little Hearts Matter charity during an assembly to Year 3. She confidently presented information about the charity whilst sharing her own personal experience. She also organised a fundraising mufti-day for Year 3 and excitedly shared the total money raised during a celebration assembly.

This is ABSOLUTELY GREAT WORK Amelia, we are so happy to present you with the Ambassadorial Award.

Sophia, Fundraising Award

Sophia is a good friend of one of our other Brave Heart winners, Amelia. After hearing about Little Hearts Matter from Amelia, Sophia decided she wanted to raise some money to donate too! Sophia went home and baked pumpkin bread and chocolate pancakes and decided to sell them on her street to her neighbours! Very innovative Sophia.

Sophia, with her moms help created a sign using Amelia’s photo and even used the Little Hearts Matter logo so that her neighbours would see what charity they were supporting. Not stopping with a stall, Sophia with the help of her sister and their puppy went door to door asking if people would like to buy their baked goods as their money would go to Little Hearts Matter, a charity that helps her friend Amelia who has half a heart.

Sophia’s mum told us;

We’re really proud of Sophia. She was absolutely determined to make her project work and didn’t rest until the kitchen was spotless and every penny was counted!

Amelia’s mum nominated Sophia for the Fundraising Award as she was so touched by this gesture and we are super happy she did. WELL DONE Sopia.

Chloe, My Heart Award

Chloe is nine years old and has Hypoplastic Left Heart Syndrome. Chloe has worked hard to gain a better understanding of her heart. In order to do this, help her anxiety and educate her peers, Chloe created her own book to explain life with Hypoplastic Left Heart Syndrome. When struggling to understand the hospital, different wards/departments and procedures Chloe created a board game to explain and comprehend this information in a fun way which has worked for her! In fact it was so successful in educating her about the hospital and what goes on within that she hope it will help others in the same position as she was in.

Chloe’s play specialist told us that:

Chloe is a delight to work with, she has a zest for life and enjoys being around her family and friends. She doesn’t allow her condition to define her, but makes the most of being ‘Chloe’ every day.

Her community nurse told us that:

I have known Chloe many years now, she has faced so many scary medical procedures, but still is a very strong and brave girl. Although her heart condition is very serious, she lives her life to the fullest. She loves being a girly girl and tries to not let her condition take over her day to day life.

We are very happy to award Chloe with the ‘My Heart Award’. WELL DONE Chloe you have gone above and beyond to not only understand your heart and the hospital yourself but to help others too.

Lucy, Fundraising Award

Lucy is a youth member of LHM. Living with Tricuspid Atresia affects Lucy’s energy levels quite substantially in her day to day life. After being an active member of the youth group and coming along to many LHM residential events where she was able to learn more about her heart, energy and how to manage it, Lucy decided she wanted to fundraise for Little Hearts Matter. When deciding how she wanted to raise money for LHM Lucy decided to try and challenge herself and her fitness too.

With that in mind Lucy with the help of her family decided to walk the city walls surrounding York. A whopping 3.4 km long. There were times when Lucy struggled, even had a lie down but she completed the Trek and raised over £450 for LHM which is AMAZING.

Lucy’s mum is so proud of Lucy but also added how this impacted her confidence saying, 

She is proud of herself! What an achievement!

Lucy absolutely deserves the LHM ‘Fundraising Award’ and we are so happy to send it her way.

Thomas, Independent Living Award

Thomas is 15 years old and has Hypoplastic Left Heart Syndrome. He is a regular at all LHM events and a pleasure to be around.

Up until recently Thomas has struggled with independence but according to his mum,

Last summer, inspired by his peers at the LHM PGL weekend he decided he wanted to be more independent and take his tablets orally. Once he’d made his mind up he conquered the ability to swallow the tablets. He now sets the alarm on his phone and takes his tablets independently always telling us he’s doing so.

After conquering this, Thomas has now grown either further and is learning to do his own INR. Little Hearts Matter are so excited to be able to give Thomas the ‘Independent Living’ Award.

Imaan, Ambassadorial Award

Imaan is 13 years old and has a double inlet ventricle. Last year Imaan began her journey with the Little Hearts Matter youth services. Since then she has joined in with youth residential events, written her story for our website and newsletter as well as coming in to the office to be the voice of an up and coming youth animation but to record footage to support our Facebook campaigns.

Imaan has shared her goals of becoming a journalist and wanting to create awareness of single ventricle heart disease and is absolutely on the path to do so by being a fantastic ambassador for Little Hearts Matter.  By sharing her story and the struggles she faces she helps others either feel less isolated or learn more about life with half a heart. Congratulations for winning the ‘Ambassadorial’ Award.

Amber, My Heart Award

Amber attended her first youth event with Little Hearts Matter in 2018 not fully understanding her heart condition. Amber is 15 years old and has Pulmonary Atresia.

She now shows a great improvement in her knowledge not only with regards to her condition but also how to manage her daily life. Amber particularly benefited from the Little Hearts Matter Energy Project workshop and now uses her spoons to manage and explain her challenges with her energy levels. This has also helped increase her confidence in managing her heart condition at school.

Amber’s mum told us

After ten months absence from school Amber returned to school, sat an exam and achieved the highest score in the class.

We are thrilled to see Amber win the ‘My Heart’ Award.

Noah, Fundraising Award

Noah is 12 years old and has Hypoplastic Left Heart Syndrome. Over the past two years Noah has worked tirelessly to raise nearly £2000 for Little Hearts Matter.

Noah is a whizz with technology and ensures that all advertising and marketing for his fundraising events is top notch. In fact Noah’s events have been so successful that they have attracted media attention, putting Noah, and his fundraisers and Little Hearts Matter in the limelight.

Noah is now a regular at LHM youth events enjoying both residential and day events and has created Vlogs of his experiences that have been put on the official Little Hearts Matter Youtube channel.

A great big well done for winning the ‘Fundraising’ Award.

Seb, My Heart Award

Seb is 15 years old and has Hypoplastic Left Heart Syndrome. He has really started to not only understand his heart condition but explain it to his teachers so that they understand more too. Because of Seb’s explanations the Energy Project is now used in his learning so that he can get the most out of his education. Even when Seb starts to get affected by his lack of energy he is able to understand why.

Seb has also worked with his teachers to write some absolutely fantastic songs about his heart condition that not only raises awareness but showcases his ability to understand how his heart works and how this affects his day-to-day life.

Seb understands his heart rate and using his digital watch that monitors his heart rate knows when to sit down and relax as well as why.

Seb, you have come on in leaps and bounds – congratulations on winning the ‘My Heart’ award.

Jasper, My Heart Award

Jasper has been a great participant in many LHM youth events. He is 13 years old and has Hypoplastic Left Heart Syndrome. Recently Jasper started to recognise changes in his energy and pushed for appointments to be made so that he could either get more support or understand what was happening better. Despite having issues with needles and hospital Jasper really took part in his appointments and the discussions, as well as welcoming further treatment after taking the time to process what was happening.

Jasper’s cardiac nurse specialist added that;

Jasper demonstrated exceptional courage and maturity to initiate conversations with his mother about how his symptoms had worsened.

He has approached this in such a mature manner and absolutely deserves the ‘My Heart’ award.

Thomas, Fundraising Award

Thomas is also being awarded the ‘Fundraising’ Award. Over the years Thomas has raised thousands of pounds for Little Hearts Matter. Notably Thomas has achieved a large portion of this by challenging himself with his swimming.

 

 

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    2 weeks on from our initial release of the ‘Wrap a Blanket’ video and we have reached over twenty five thousand people so far. An incredible amount of awareness has been raised. We have also filled our first blanket on the Visufund page, thank you so much to everyone for making this happen!

    But to support every heart-family, we are going to need to fill even more blankets. We are confident in you, our generous supporters, to help us reach our goal of filling 3 blankets by Christmas.

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    In 2020, as many as 550 new families will receive the life changing news that their baby has only half a working heart. They will all feel frightened, isolated and overwhelmed with new information.

    Help us to support them with this devastating news and to feel part of the LHM family. The half-a-heart journey truly is a rollercoaster, but we are here for these incredibly brave families every step of the way.

    To be able to support all of the heart-families out there, we need your generosity this Christmas.

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