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.
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.