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 www.taylorbros.co.uk 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

AWARENESS CREATES ACCEPTANCE


‘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 

Tuesday’s Awareness Creates Acceptance

Awareness creates acceptance 💚

‘I’d like people to know it’s okay to reach out and ask questions about my heart hero child. I had a million questions and worries about my heart hero baby with no one to ask.  Reach out to me and message if you have any questions about their baby who is going through the same thing, I’m here’.

‘I would like people to be aware that If he looks blue and I don’t look worried, he’s fine. Don’t panic!!  I’d like people to know he’s always going to have a heart condition but we don’t want him to be treated any differently to any other child in nursery or his brother (as much as we can)’.

‘The condition doesn’t define him, it makes him. I’d like other to teach their children acceptance of differences and realise that everyone is perfect in their own way.
Ask me a question? I will answer. I don’t bite! I want to educate people on CHD, not hide it from the light’.

 

Please vote for us!!

 
 
 

Charity number 1183079

 
Your nomination really counts

£1,000 could make a big difference to the work we do [briefly say what that work is.] That’s why we’d be really grateful if you could nominate us in Ecclesiastical’s 12 days of giving. Your nomination could be the one that wins us £1,000.

Open to eligible charities in the UK, Republic of Ireland, Channel Islands and Isle of Man, Ecclesiastical will be donating a total of £120,000 to 120 charities over 12 days in December and we’d love to be one of them [Briefly explain how the donation would be spent and how it would help. E.g. If we did win, we’d be able to continue to support our Heart children and their families.

It’s quick and easy to nominate us. Just visit movementforgood.com/12days, click ‘nominate now’ and enter our details. Nominations are open now, closing at midnight the day before each draw. Charities not drawn will be carried over to the next draw, and draws will take place each weekday from 7 December to 22 December 2020.

The more nominations we get, the greater our chance of winning, so please spread the word to your friends and family.

Thank you in advance for your time and support.

Awareness Creates Exceptance

Happy Monday.

Today is the first day of our Awareness creates acceptance campaign. 

What our heart parents say…

‘I would like people to understand that CHD can’t be cured and lifelong checkups are needed.

And I would also like people to understand that to us the anniversary of the surgery is both a celebration of life/second birthday and a really hard memory to have to cope with every year’.

‘I would like people to not be scared to ask questions and include my heart child’.

‘I’d like people to know that although he looks perfectly normal on the outside and has no immediate health issues. Medically he’s not like most others and there’s a reason I worry more with him’.

‘That with every cry “help me mummy “ “I wanna go home” every bloods that are taken every procedure every surgery we scar and they scar in so many more ways then physical that leaves those memories etched into your brains and hearts that don’t fade away.

For every battle won however small be that they are building an appetite again or they even took medication well.  For the future being so unknown and scary at times but being so thankful for every milestone and every year we make. In the lyrics  of a song “Hoping for the best, but expecting the worst.

Are you gonna drop the bomb or not?”.

For being told countless times “ your so brave I don’t know how you do it I couldn’t “ there isn’t a CHOICE.

That a hospital would eventually feel more like a second home or at least somewhere you know very well. 

That she is incredibly strong and resilient and yes children “do bounce back Sandra” but guess what even children can only take so much. That the older the heart child gets the harder it gets in so many ways. 

That they have been through more in their small life’s then many have in their lifetimes. That we didn’t choose nor want this journey at times but thankful for those we have met and loved along the way. That miracles are real and they are proof of that’.

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