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

Noah, Independent Living and Fundraising Award

Noah was nominated and put forward for two awards, below we describe why he was well deserving of receiving both an ‘Independent Living’ Award and a ‘Fundraising’ Award.

Noah has always had a good understanding of his HLHS condition and the medications he takes.  He really took on board the ‘spoons’ theory and talks about ‘how many spoons’ he has, he understands how he can help himself by conserving energy and saving it for other things e.g. taking a lift instead of the stairs to not ‘waste’ energy or using his wheelchair at the weekend so he’s not too tired for school on Monday.

In November 2019 Noah went on a school trip to London for four nights, the longest he’d ever been away from home without parents to monitor his activity levels and medications.  Noah knew that whilst he would have a member of staff there for him, it would ultimately be up to him to manage himself; his energy levels, when he needed his wheelchair, taking his medication, eating and drinking enough and at the right times. Numerous meetings were held to make sure that everything was in place, Noah was determined! Noah also suffers from anxiety so this was an added pressure on top of the physical elements of HLHS. Noah had a great time in London.  He managed his energy levels well, took his medication and didn’t let his condition stop him.  He still made the right decisions though, he didn’t go on the long evening Jack the Ripper walk but instead saved his ‘spoons’ for the next day.   Noah and what was a massive step towards independence in living with HLHS.

Rebecca, from Noah’s school said:

I accompanied Noah on his first independent trip to London. Noah and I spoke many times before the trip and got to get to know each other – to me trust was vital, I needed to know that Noah was comfortable in being able to tell me his needs as and when they changed. Noah has a wicked sense of humour and is very mature for his years when dealing with his condition. The first day was a day of travel, tiring for all, Noah agreed that a 2 hour walk around London on the ‘Jack The Ripper Tour’ although sad to miss, would not be wise. Instead we had an alternative adventure and went to see St Pauls at the end of the street in all its glory in the dark! Lots of other visits took place and Noah fully embraced them all with great humour, knowledge and resilience. I have no doubt that Noah is more than worthy of this fantastic award. 

Noah has half a working heart but has never let this stop him from fundraising for Little Hearts Matter. Last October, Noah organised his fourth bake sale to raise funds for Little Hearts Matter. He planned and promoted the event and contacted local companies for their support in donating ingredients for the baking as well as items to sell on the day. Noah was interviewed by his local newspaper, The Evening Herald, and received Student of the Week at school for his fundraising efforts – spreading awareness of LHM. The bake sale was a success and he managed to raise more money than previous years! 

Fantastic work Noah and both awards are very well deserved.

Tamsyn, Ambassadorial Award

Tamsyn has a younger brother with half a working heart. Recently Tamsyn completed an enormous research project on congenital heart disease and future treatments for a school project. She contacted and visited her brother’s cardiology team and visited medical and engineering researchers. She researched and gained greater understanding into different types of congenital heart conditions, current surgical treatments and looked into the future use of 3D scanning, stem cell research and virtual reality in the the treatment of these conditions.

This was written up into a project, but also presented as a display at school for teachers, parents and school children where she was able to show the value of Little Hearts Matter role in this area.

She received a platinum award and full marks for her outstanding work. We are sure you agree that Tamsyn worked hard for her ‘Ambassadorial’ Award

Sophie, Independent Living Award

Sophie has half a working heart and has really made some improvement in her independence in the last year. Previously Sophie found it really difficult to do her INR tests at home and would get really upset. She has learnt to accept this and get over her fears, not only did she start to let her mum do the tests without a fuss but has progressed and started to do these tests independently. 

Her mum is over the moon and so proud as she knows this will help her so much in the future. This wasn’t an easy journey for Sophie or her mum but now that Sophie has started to do these tests independently they couldn’t be happier. 

Sophie’s mum told us that she thinks Sophie is

Amazing and inspirational.

A well deserved ‘Independent Living’ Award Sophie.

May, Fundraising Award

May has a younger sister with half a working heart. We were told that May is the proudest  big sister and Polly follows her around like a shadow, she involves her sister and makes up games they can play together, even though Polly mostly ends up being the servant! She is very patient with her when she rifles through her room and protests everything is ‘hers’. She explains to everyone why Polly has half a heart, what medications she is on and told everyone she couldn’t have any chocolate when Polly was on her MCT diet, but helped her count down the days until she could!

May can’t wait for Polly to start at her school this September as they will have one year together before May goes to secondary school. She is very proactive in raising awareness of Polly’s condition and recently persuaded her school to host a ‘Dress in Red’ mufti day with donations going to Little Hearts Matter where she presented to the whole school assembly explaining about Polly’s condition and the work LHM do.

May’s mum told us:

We couldn’t be any prouder of our beautiful girl.

What wonderful work May – you absolutely deserve the ‘Fundraising Award’

Helena, My Heart Award

Helena has half a working heart and until recently didn’t understand much about this. When Helena joined the virtual youth group (for those aged 13 plus) on Facebook chat she made some great friendships and worked hard to not only start to understand and accept her heart condition but to try and support others on a similar journey to hers too! Helena made such an impact that two of the young ladies she became friends with through our youth group nominated her for this award together.

Here’s what Lucy and Colbie-Kate told us:

On the LHM social group and medical group Helena has shown understanding in her heart condition and has become a more well rounded person, understanding her condition and emotions surrounding it. Helena is a sensitive, bubbly, enthusiastic, friendly girl who supports everyone in the group.

Our youth leader, Lexie, has also seen a great improvement in Helena and was very happy to see her nomination. Well done on your ‘My Heart’ Award Helena.

Harry, Independent Living Award

Harry has half a working heart but it never stops him from doing what makes him happy, especially playing football for the local team. Harry is currently the top scorer. Harry has shown that he understands his limits and still pushes himself to achieve which also includes doing mini concerts for his family at home, mainly consisting of Take That songs.

Harry’s dad tell us:

Harry is my hero.

Harry’s football coach even got in touch and told us that:

In the short time I have been the manager of the football team, Harry is a pleasure to manage. His attitude is second to none and he has an abundance of enthusiasm that pushes both him and his team mates on. He is currently our top goal scorer this season with over 20 goals to his name and has earned the respect of his team mates as potentially being a top striker like his idol Harry Kane! Harry deserves any award he is put forward for and indeed recognition for his hard work, passion and commitment. I am very proud to have Harry as one of our team.

Well done Harry, a well deserved ‘Independent Living’ Award.

Evangeline, Independent Living Award

Evangeline has half a working heart and her parents cannot believe how mature she has become in the past year. If Evangeline is off school poorly she will email them of her own accord to ask for work to do at home. She manages her homework in study lessons at school so she can preserve her energy by not doing school work in the evenings. She is disciplined towards learning and is already making career choices which will be realistic with her heart condition and other disabilities.

A year ago, she had a 24-hour ECG monitor and refused to leave the house with it on. This year, she had to have one and said “Oh well, it’s part of being me” and tucked it under her school uniform. She sets alarms on her phone for her medicines and is well on her way to independently managing them.

Evangeline no longer needs tell to use her wheelchair at school. She has an electric one so she can get around independently and when she goes to college she will have a new one so that she will be able to travel independently for the first time ever. This has been a tough part of Evangeline’s day-to-day but she has learned to embrace it’. Evangeline has recently been given some specialised equipment so she can learn to cook independently. Who knew a hands free tin opener could be so much fun.

Evangeline’s mum told us:

I used to worry about how this tiny, timid girl would cope as an adult, but I realise she is nearly there and my worries were unfounded.

Well done Evangeline on winning your ‘Independent Living’ Award.

Ethan, Independent Living Award

Ethan has half a working heart and started secondary school in September. This move involved more travel, more homework, making new friends and learning to manage his energy for himself. Ethan has surpassed himself settling into his new school and while he struggles sometimes with his fatigue, he has always had his homework done and has been elected as a prefect for the school council. He is also involved in a drama scholar, has been in a dance show, was a finalist in a writing competition and alongside all this continuing to work towards his grade 4 violin, grade 3 piano and he is acting in adverts and on TV and preparing for his West End debut sometime this year.

On top of this Ethan manages his own medications in the morning and is completely independent with injecting himself every evening. Since turning 12 he has also had a lot more involvement in his hospital appointments, asking questions and giving information. He has had to learn to speak up when struggling at school in PE and has had to be brave about talking to his teachers independently about this too. 

Ethan’s parents are very proud of how he is developing in managing both his physical and emotional challenges and we agree. Well done on your Independent Living Award Ethan.

Dawn-Louise, My Heart Award

Dawn-Louise has half a working heart and has been nominated by the mother of her friend (who also has half a working heart), Claire. They met through Little Hearts Matter. Claire told us that first met Dawn-Louise in 2017, it was lovely for Tia to meet Dawn-Louise and they struck up a beautiful relationship.

What really took me by surprise was Dawn-Louise’s understanding and knowledge about her heart condition. As us heart mums like to do, we got talking and Dawn-Louise’s mum explained how Dawn-Louise had always shown such great understanding of her heart condition from a young age, as her understanding grew with her, she became more open to sharing her story with others. I could clearly see this.

She made her peers at school feel comfortable in asking any questions they had about her cyanosed lips, scars and hospital stays, which allowed their inquisitive minds to learn about something completely new without worrying she would be upset. She now has two close friends in particular who make sure to ask how her recent hospital visits went, know what games are safe to play so she never feels left out and they are always happy to help when she is struggling, none of which would have happened if Dawn-Louise didn’t have the confidence to share such a unique and private part of herself.

I learnt that from the age of seven Dawn-Louise’s want to educate and raise awareness grew – she started making posters for her classroom during CHD week, and even started making videos, which she now posts on YouTube to help other heart warriors not feel alone, and help educate those who have never heard of HLHS or congenital heart conditions. She proudly displays her scar in dance show uniforms, never feeling the need to hide who she is. Hearing Dawn-Louise talk confidently about her heart, Tia asked to start following Dawn-Louise’s channel. Dawn-Louise is our heart hero as she has given Tia and I’m sure many others the confidence to talk about her heart more and has given her a willingness to learn. She is an inspiration.

She also definitely deserves her ‘My Heart’ Award – well done Dawn-Louise

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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    SVHC’s are a form of complex congenital heart condition. The child has only one working heart pump, affecting the flow of oxygenated blood around the body.

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