Heart Heroes Hubs:

 

How is the charity structured?

The charity is managed by a central hub in Gloucester, which handles the overarching planning, decisions, finances, etc., but Heart Heroes is made up of seven hubs all over Southern England and Wales. The charity now has subsidiary hubs in Oxfordshire, Hertfordshire, Bristol, Devon, Cornwall, and Wales.

What is the need for other hubs?

The other hubs work to alleviate some of the pressure from the central hub in Gloucester, by providing the exact same charity work, only for a specific region. This means that families can get more local support, enabling shorter commute times to meet ups, and letting the families build a camaraderie in an area closer to them. Furthermore, the meetups then occur in smaller groups which ensure that families and their Heart Children do not feel overwhelmed and are not presented with so many people that they cannot create an effective and close-knit support group.

How are these hubs run?

All work done in local hubs is by volunteers, who are passionate about the cause of the charity and believe in it so much that they are willing to give up their free time to see to it that families get the support they need. These volunteers in specific regions have an additional benefit in that they can get to know the families far better than a central hub could, and allow families to form deeper connections with the charity, and get help and support on a more personal and tailored basis.

What can I do at my local hub?

The charity organises monthly meetups, run by volunteers, for the families at each hub: at these meetups, the parents of the Heart Child can enjoy some coffee and cake, while the children do what children do best – go and play with one another. It offers a genuine and authentic chance for families going through similar ordeals to come together and talk about their experiences with others, offering help and advice to each other. For some children, particularly those who are of the pre-school age, it is their only chance to interact with other children while the pandemic rages on and can be invaluable to developing social skills and awareness. As the children get older, they can continue their friendships and support each other through whatever challenges the future of their health and illnesses may present them with.

How are these hubs financed?

Well, that’s where you come in. It should come as no surprise that they are expensive to run, and we need continued support from generous donors to ensure that families can still get access to the support, no matter what form it comes in or how little it seems, that assists them with what is a very difficult stage of their lives. Parents are renowned worriers, but the parents of children with congenital heart diseases are even more so: they have the added stress of the illness hanging over them at all times, trying to remember various medications and ‘dos & don’ts’. Local hubs must pay for things like venue hire, storage of equipment and toys, and providing refreshments to make these experiences and meaningful and helpful as possible for the people they strive to help.

How can I help?

As always, any donation to the charity, big or small, is an enormous help and has tremendous value to us: your money will always go to funding projects like these meetups. However, with the addition of more schemes like providing days-out for the hubs post-COVID restrictions, we are really looking for further support for our hubs. Because the hubs are very much a local community effort, it would be great if we could get some local businesses on board, who could perhaps sponsor these events with their charity days at work. Doing this means that the families can feel cared for by the community, and that businesses who are considering their next charity have a direct hand in helping with projects in their ‘back garden’.  If you belong to one of said businesses who are interested in directly helping their local community, you can get in touch with the charity by emailing email@heartheroes.co.uk .

 

 

 

 

 

Give Hope

The GiveHope Campaign

What is the GiveHope campaign and why is it important?

GiveHope is a community of monthly donators, committed to making a difference in the lives of those afflicted by heart conditions.

Families with children suffering from congenital heart diseases undergo countless struggles in areas we often take for granted: even something as simple as playing with friends and being active can prove a huge challenge, and often these families will be dealing with things like isolation, loneliness, emotional exhaustion, anxiety and depression.

GiveHope ensures that we are able to provide the services we do in order to alleviate some of the suffering and negative feelings from the families and their children. It provides us with a regular source of donations, and means that we can be consistent in our services, meaning that these children can always have the support they need. In 2020 alone, we supported over 300 families. With the growing GiveHope community, we hope that our services will be able to reach even more families.

Your continued support to our heart heroes through GiveHope will give you an insight into what we are doing behind the scenes by receiving exclusive updates, and means that your donations can fit your budget and enable you to give to a cause close to your heart in a hassle-free way.

What role can I play in the community?

You can choose to become a…

  1. Heart friend: for £10 per month, you can support a child monthly. All heart friends receive a Heart Heroes keyring as a token of our appreciation of your support.
  2. Heart supporter: for £20 per month, you could provide our Heart Heroes important social opportunities to feel normal. All our Heart Supporters receive a Heart Heroes water bottle as a token of our appreciation for your support.
  3. Heart champion: for £50 per month, you help alleviate some of the emotional trauma families go through when they have a child living with a heart condition. All our Heart Champions receive a Heart Heroes umbrella as a token of our appreciation for your support.

What can you expect when you join?

  • We want our GiveHope community to feel invested, connected and eager to share the hope of changing lives.
  • You will join a special group of people reaching out each month to provide support for children and families who are dealing with heart conditions.
  • Together, we can change lives by supporting their journey.

GiveHope is not just passive monthly giving.

What if I still want to help, but don’t want to give monthly?

If you don’t want to join GiveHope just yet, you can still be an enormous help by giving a one-off donation. Every penny helps a child and their family create lasting memories through the events and activities we set up, and takes off some of the stress of having a child unfortunate enough to suffer from a congenital heart disease.

Heart Mum’s share their words of heart felt emotion.

By Heart Mum Marta.

‘We are fine. Until we are not. There are waves we must ride out, days where all of the self care, spiritual growth, leaning on eachother cannot stop “the wave”. There is an invisible weight that rests upon the shoulders of those with a poorly child. A trauma in the deepest parts of a mother or father who has handed their child over for life saving surgeries and procedures. A pain behind the eyes of a parent who has spent hours sat by the side of their child as they fight for their lives. There are memories etched into our minds that creep out unexpectedly and roll down our cheeks as we smile and say “I’m fine”. There is a resistance to the toxic positivity that preaches at us to be grateful, to think that it’s “not that bad”, to be positive, to see that it is worse else where or to somehow believe that everything happens for a reason. There is an anger that rages inside when we are told that our children “look fine” or the lack of understanding infringes upon our right to grieve the life we envisioned for them. A longing for the days where we didn’t worry about our children’s mortality on a daily basis. These moments come.. they hurt like hell… and then they leave and when they leave we pick up the pieces, readjust ourselves and we strengthen up because our children need us. Because life is happening now and we know only too well just how precious that is. We give a silent nod to those around us who are having similar experiences. We look up to the skies and trust that God will grant us many more days/ months/ years and do our very best to enjoy every second of them..and trust that when the dark moments  come we are filled with enough light to get through them. But every now and again there is “the wave” and we remind ourselves over and over that shame simply cannot reside there because “the waves” bring with them healing and wisdom and a capacity for the deepest gratefulness for the simplest of moments. Ride the wave. Be okay with the wave. I know it hurts.. I know it hurts. #poorlychildren #heartmum #chd

By Heart Mum Lisa

‘Underneath my vest there is a line right down my chest. 

Its a scar some will say and some will say my victory.

It’s beautiful my mummy says because it tells some of my story, one of bravery and holding tight.

I fight CHD everyday and so far it hasn’t got the better of me.

CHD will tap me on my shoulder sometimes but I’ll tap it right on back.

Everyday we’re making precious memories and that will keep me on track’.

 

Donate to Heart Heroes Via Wishy

What is Wishy?

Wishy is a new and exciting platform that allows you to select the exact expenditure of your donation. Its name is derived from the method of donating: by donating the given amount to fund a specific endeavour or product, you are granting the ‘wish’ set by the charity – these are specified items that the charity has posted based on the wishes of the people they help. This is a direct and no-nonsense way to donate, and ensures that your money goes to the cause you would most like to help within the various ongoing projects of a given charity.

How can you help Heart Heroes?

Heart Heroes currently has a number of ‘wishes’ on the platform, covering a range of the avenues of the charities work, and a range of prices – your donation makes a direct, tangible and immediate effect, no matter which price range your donation falls into.

The current wishes include:

  • Bespoke handmade gown to be worn during and after open heart surgery – £25
  • Bespoke handmade Hospital Pyjamas for Heart Child during and after open heart surgery – £25
  • Alive Kor mobile device to send ECG reading to hospital – £95
  • A Heart Heroes Hug- contains arts/crafts, goodies and activities to send to make a Heart child smile who may be isolating, recovering from an operation or is about to have an operation – £30
  • A wild and willow nature box – £15
  • A sensory box to aid sensory play, contains a touchy-feely book, ribbons, spikey ball, foil blanket, bells and feathers – £25
  • Heart Hero cape with name embroidered – £15

You can decide the cause that most interests you in terms of how you would like to positively impact the lives of those children with congenital heart diseases, but is worth mentioning that, no matter the cost of your gift, with Wishy you know that it will make the lives of those children (and their families) unfortunate enough to be affected by these dreadful illnesses just that little bit easier and more comfortable – letting them know that they are not alone in this journey, and that someone ‘out there’ has chosen specifically to donate whatever gift it may be. The magic of Wishy is that it adds a more personal touch to both ends of the donation: you get to know that your donation has an immediate and direct impact, and the child gets to know that someone has chosen to grant a specific wish that really will benefit them.

How can I donate with Wishy?

Luckily, it’s very easy!

Simply go to Wishy – When giving is believing and select ‘Charities’, and then ‘Heart Heroes’ before selecting the wish that you would like to grant, or go directly to the Heart Heroes page with Wishy – When giving is believing.

Please do consider donating.

 

National Children’s Day UK 2021 Sunday 16th May

This year National Children’s Day UK will take place on Sunday 16th May and people can raise awareness about their activities for the week up to and including the day.

From family videos to school and community events, local authority initiatives, talks, seminars and youth led campaigns,

The importance of Children’s Voices

National Children’s Day UK (NCDUK) is all about the importance of a

healthy childhood and how we need to protect the rights and freedoms of children in order to ensure that they can grow into happy, healthy adults and especially about the impact of COVID on children and young people. it’s a great opportunity for everyone to raise national awareness about the things they care about –

This year partnering with The Children’s Voice www.thechildrensvoice.net and its supporters, so that we can help raise national awareness about the thoughts and concerns of children and young people – and the changes that they would like to see take place for the creation of a safer and more sustainable world.

Why is this so important? Because children have the right to participate in the conversations that are shaping their futures.

The conversation continues on social media #NCDUK2021 www.nationalchildrensdayuk.com

For more information, please contact Sally Grindley, NCDUK Project Director

sally.grindley@nationalchildrensdayuk.com

m: 07766 201102

www.nationalchildrensdayuk.com

GUARDIAN 16th Jan 2021

A major coalition of child health experts warns that many families are being “swept into poverty” by the pandemic, which is set to significantly add to the 4 million children living in deprivation before the Covid crisis.

CHILDREN”S COMMISIONER REPORT – JAN 2021

A staggering 1 in 6 children now have a probable mental health condition. We do not know how far this spike will have long term consequences on children’s mental health, nor do we know the impact of further lockdowns, but it is highly likely that the level of underlying mental health problems will remain significantly higher as a result of the pandemic. The data I am publishing today covers the period up to end of March 2020, so largely pre-Covid, but what it shows is a system without the necessary capacity or flexibility to respond to such seismic events in the lives of children.

www.nationalchildrensdayuk.com

GUARDIAN – NOV 2020

National Children’s Day UK (NCDUK2021)

BBC NEWS – DEC 2020

More than a third of children were worried about getting Covid-19 and dying. Of the 1,000 children asked, 47% said they were experiencing anxiety.

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To celebrate NATIONAL CHILDREN’S DAY and to help us keep supporting children living with Heart Conditions we are asking people to text to donate £5 to raise £500 to give £100 to each of our Heart Heroes Hubs in readiness for our physical meet ups with our families. Please support…see below.

Heart Heroes Cornwall Hub

Charity shows it is all heart with two new centres

A charity which supports families of children with serious heart conditions is setting up two new hubs so it can extend its reach – and with the easing of Covid restrictions looking forward to face-to-face meetings for the first time in months.

Heart Heroes is opening hubs in Devon and Cornwall, so it can help even more families, with its regular events, support groups and signposting services. This now brings the total to five hubs, with the others in Gloucester (where Heart Heroes is based), Bristol and Wales.

“Heart Heroes supports families of children living with heart conditions and our goal is for children and their siblings to be included in all our events, along with parents, grandparents, aunties, uncles and any other close family,” said charity founder Kelly Cornish.

“By opening new centres, we can reach more families. We can’t wait to get going again with our meet-ups, which will start in May. These are a great chance for parents and families to get together and share experiences and support one another.”

The Cornwall Heart Heroes Hub is being run by Charlotte Aldridge and the first of the monthly get togethers will be on Monday May 24, at Turners Hall Scout Hut, Turo, from 10am to midday.

Charlotte got involved with Heart Heroes following the experience of having her first baby, Jayden, when she was 18. At her 20 week scan, doctors picked up a problem and immediately contacted specialists at Bristol Children’s Hospital.

Jayden was found to have Transposition of the Great Arteries (TGA) and Charlotte was told to he would need to undergo surgery within days of being born.

“I was just terrified when I was told,” said Charlotte, from Liskeard. “I really hoped he was fine but when we were scanned again with the consultants watching on a screen from Bristol they found not just the TGA but other problems too.”

Induced at 37 weeks, and following a difficult labour and delivery, Jayden was whisked away after spending just moments with Charlotte. At five days old and again at eight days he underwent surgery. Now aged eight, he’s had surgery a further 11 times, and is hospital for a couple of weeks each time.

Charlotte – now also mum to Oscar, four, and Scott, three – can’t rule out further surgery for Jayden, although he is currently well and healthy.

“This depends on Jayden and how he grows. He has had one of his heart valves replaced, and the other one may start to have a similar problem. We’ll just have to see how he gets on.”

Now Charlotte wants to support other parents who are facing similar challenges. “When I had Jayden, there was nothing like Heart Heroes. I know a few families already in Cornwall but since word got out about the new Hub I have been contacted by another five or six. We just want to reach out to others, get them connected and put them in touch so they can support one another and not feel as alone as I did.”

For more information about the Heart Heroes Hub in Cornwall email charlotte@heartheroes.co.uk For more about the work of Heart Heroes, visit https://heartheroes.co.uk/.