Supporting Hero takes on a Triathlon for us!!

This supporting Hero is taking on the ‘BEYOND COTSWOLD TRIATHLON’.

Dariusz said ‘I am taking on this incredible challenge of competing at Beyond Events Cotswold Triathlon, hoping to raise money for Heart Heroes, An amazing charity which supports children with Congenital Heart Defects. I have always been an active person, competitive, very much into sports and fitness/exercise; Originally, I’m a chef and healthy nutrition is also a big part of my life. I have a number one supporter in my 5 year old daughter Olivia, who is very much like her dad and loves sports and competitions and cannot wait to see her dad competing (and winning, no pressure though ’

A huge good luck and thank you from us.

Heart Heroes Awareness Song Update

A huge thank you to everyone who took part in our Virtual Christmas Fair yesterday. The event page is still live so you can still go back and see what is on offer. The raffle was drawn yesterday, congratulations to all the winners!! £780 was raised 🤩

Today we start off with some amazing news our awareness song ‘I’AM THE SONG’ now has a release date…December 7th which will be downloadable on most platforms Spotify, iTunes, Amazon etc. Created by the amazing Richard Lane and sung by RAENE who’s voice is simply beautiful. To whom we cannot thank enough!!

The song was very much written with our heart families in mind but we truly feel this will resonate with many people. Our plan was and is to sing the song and have it filmed with our heart families and a choir in the amazing Gloucester Cathedral as soon as we can.

World Children’s Day

World Children’s Day is marked each year on November 20 to celebrate the date when world leaders made a promise to all children, giving them their own set of rights.

Rights exist to make sure everyone is treated fairly and has the basic support they need to survive.

Children already had the same human rights as everyone else, but in November 1989 the United Nations (UN) General Assembly adopted a new proposal, designed to improve child welfare and encourage all countries to work together to build a better world for children.

This special set of rights is made up of 54 articles and is called the Convention on the Rights of the Child (UNCRC).

These include, the right to:

💖Life, survival and development
💖Medical care and nutritious food
💖Get information that is beneficial – from newspapers, social media, the radio or TV etc.
💖Receive help from their government
💖Rest and play
💖Not have to do work that is dangerous
💖Be raised by, or have a relationship with, their parents if it is safe to do so
💖Think for themselves
💖Protection from violence, abuse or neglect
💖An education
💖Express their opinions, be listened to and taken seriously


Heart Hero Esme

Back in August Heart Heroes funded little Heart Hero Esme an Ipad to use whilst she has her treatment for Leukaemia and for during her hospital stays. This is just one example of what we fund as a charity.

Today we received this message and pictures from Esme’s mum….

‘I know I’ve said it before but….. Thank you 🙏 thank you 🙏 thank you 🙏 your kind and thoughtful gift has kept Esmé occupied, made her smile, got her through some tough times and soothed her when she was at her worst. From her favourite shows and music to the sweet soft lullaby app I’ve downloaded for her it’s all absolutely amazing xxxxx’

If you’d like to donate to the support we give then please ask us about becoming a regular giver or donate.

Every donation truly makes a difference!

To those who give regular, thank you from the bottom of our hearts 😘

Tales Of The Heart

Working together with Heart Families South West we have now received these amazing books. Heart families shared their heart stories with us that have now been put into print thanks to Onymous for the amazing design work of the book and for the quality printing.

These are books of hope, the future and will be an amazing resource 💖

“Fingers crossed for the future because Finley has definitely proven to everyone that he is a strong little fighter”

At the back of each book there is a section titled looking back…things I wish I’d of known…here is one

‘Picu is the most scariest of places but the nurses & doctors are absolute angels. They’ll make you laugh when all you want to do is cry’.

Available to buy on our shop…

Friday Feels

When asked what you’d like people to be aware of about your Heart child, this is what our families said… 

‘That every journey is different. Some children have greater needs than others (even with a similar diagnosis) and it’s good to ask questions. We like to tell (parts of) our story….not to be dramatic but to celebrate our children’s lives and to continually help us process the ongoing impact on us all!!

‘I would love people to treat my daughter just like any other child. Yes she has limitations but at the end of the day she is just a little girl. One experience was her best friend was having a sleep over for her birthday. My daughters friend told her that her mum said she couldn’t come because of her heart. It made my daughter so sad’.

‘For us we would like people to understand the seriousness of CHD particulary when it is invisable. ‘He looks so well is he better now’ really gets us to the core every time. as I’m sure we all wish that to be the case but like others have already said its life long. But also that things can change in a blink of an eye. It’s a rollercoaster and every journey is different’.

Thankful Thursday


‘I would like people not to just presume a child is healthy because they look “normal”. Maybe we are walking slower or using a pushchair with an older child for a reason!’.

‘I would like people to realise you know your child better than anyone else and having a child with a CHD is not your fault’.

‘I would like people to try and understand or at least be aware of the battle that not just our children but us as parents are fighting against this disease. I’d like them to realise how difficult it actually is and be able to talk openly without being accused of looking for attention’.

Wednesday’s Awareness Creates Acceptance

‘I’d like people to know that no question is a stupid question and that just because he’s got a special heart, he can still do anything he puts his mind too’.

‘I would like people / Mums to think. Just because he has half a heart doesn’t mean they should be afraid of him. Please invite him to parties and activities even if he can’t participate it means the world to him that he’s actually been invited and feels normal’.


‘I’d like people to know that he’s been through a hard time but is still a caring, funny and loving child.  I’d like people to know that mummy is not over reacting, just because you can’t see the things that he struggles with, doesn’t mean they aren’t there and doesn’t mean parents are over protective or over reacting.  I’d also like to echo those who have said that an operation doesn’t mean a child is fixed and also often that heart problems go hand in hand with other difficulties and diagnosis’.


#awareness #acceptance #love #mentalhealth #mindset #motivation #coach #inspiration #heartwarrior