2020 Highlights

We can all agree this year has been different, stressful at times and one we will never forget. However we must take all the positives from this time. It’s made us appreciate our family and friends much more and it’s made us come together to support our communities. 

From bingo nights, quizzes, virtual Coffee mornings and our virtual Christmas party, Heart Heroes have and will continue to support our families and hopefully bring some entertainment to our supporters. 

Heart children and their families are always our inspiration and we are forever grateful for allowing us to be part of your journeys. 

We wish you all a very safe, Happy Christmas and let 2021 be full of hope, love and good health. 

Here are a few of the highlights of 2020  through the eyes of Heart Heroes…our awareness song ‘I am the song’ is still available to download here I am the song- Heart Heroes Awareness song by Richard Lane – DistroKid

Heart Heroes Wales Hub

Meet Ella.

Ella will be running our Wales Heart Heroes Hub.

I decided to get involved with Heart Heroes, in particular their Welsh Hub as I myself have congenital heart disease. Recently I was fortunate to have a baby boy, who was born without CHD, it was a 1 in 10 chance of him being born with CHD. I realised how scary that must be for parents, having their child diagnosed with such an unpredictable illness that could never be cured. I wanted to give something back and support a good friend with her charity, Heart Heroes. On speaking to Kelly, we quickly realised the lack of provision within Wales, I live in Bridgend so have offered to help run the Wales Hub, where I run coffee mornings and will be looking to organise fundraising events.

 
Heart Heroes were not around when I was a child and I firmly believe had myself and my family had their support from a young age I would have coped better through my childhood and into my adulthood, as I would have had friends in a similar position to me, people to share my emotions and worries with. Instead I now struggle with post-traumatic stress disorder from all of my procedures and so I hope that by helping families to connect through Heart Heroes that we can reduce the impact that CHD had on everybody’s life.

Heart Hero Callum’s journey with The British Heart Foundation

Every day, 13 babies in the UK are diagnosed with a congenital heart defect. That’s over 4000 babies every year where the cause of the condition is mainly unknown.

We as a family were completely unaware of congenital heart disease until Calum was born in 2006. At one day old during Calum’s routine baby check, a doctor detected a ‘heart murmur’ or a different sound when he listened to his heart with a stethoscope. An ultrasound scan confirmed a heart defect and the words “we are failing to find some major components of Calum’s heart” will stick with us forever. As you can imagine these words turned our lives upside down and at that point we really didn’t know what the implications were or if Calum would even survive.

Calum was transferred to Bristol Children’s Hospital and was diagnosed with a complex heart condition called Truncus arteriosus where the main arteries that come out of the heart had not formed properly. I remember being given a booklet from the BHF on the heart condition and this gave us the first glimmer of hope that this condition was known about and they could maybe do something to help him. We were told that Calum would need major open heart surgery in the first few weeks of life and this had significant risks. This was hugely scary but we had no choice but to put our trust in Professor Massimo Caputo and the amazing cardiac team and hope that Calum had the strength to get through the surgery. Calum had his operation when he was 13 days old, I find it amazing to think that Massimo was operating on a heart the size of a walnut. Calum was in theatre for an incredibly long 6 hours, it was such a huge relief to see him in intensive care afterwards but also really tough to see our tiny baby with an open chest and attached to lots of tubes and machines.

Calum made a slow recovery from his surgery, spending 3 weeks in intensive care, but with a bit of time to recover and regain some weight Calum finally turned the corner and was able to be taken off the ventilator that was breathing for him. I remember this being a really emotional moment as finally we could think about our baby boy maybe coming home. We finally brought Calum home on the 17th March, 6 weeks after he was born. We felt incredibly grateful as before the BHF was founded, the majority of babies with a congenital heart condition died before their first birthday. Today, thanks to advances in treatment and care, around 8 out of 10 babies with congenital heart disease survive and will grow up to be adults.

When Calum had his surgery at 13 days old he had to have an artificial tube inserted to act as part of his pulmonary artery which takes blood from the heart to the lungs. Unfortunately this tube does not grow with Calum, so this has meant he has had a number of further operations to replace this tube. He has had surgery at the ages of 4, 6, 11 and most recently in February last year at the age of 13.Having to have so many big heart operations is hugely stressful and traumatic for the whole family. Thankfully we all have access to psychological support from the cardiac team which helps us all through some of the tougher times, and we as a family are incredibly close and supportive of each other.

Due to Calum’s heart surgeries, Calum has missed lots of school and is unable to participate in lots of activities that his friends do. Despite this, Calum makes the most of everyday and is incredibly positive. He loves supporting Bristol Bears Rugby and is a keen gamer!! He has faced so many challenges in his 14 years due to his heart condition but he is incredibly happy, positive and determined, we certainly could not be prouder of him.

Calum is incredibly proud of his ‘special heart’ and has enjoyed fund raising and raising awareness of congenital heart disease for the BHF. He has been part of big BHF campaigns including ‘Bag It, Beat It’ and ‘Wear It, Beat It’. He particularly enjoyed appearing on the Good Morning Britain sofa in 2015. He has also won BHF Heart Hero Awards in 2016 and 2018.

In 2017, ahead of Calum’s 4th open heart surgery he spoke to the BHF about documenting his journey to his heart operation. Calum wanted people to know what it is like to have a ‘special heart’ and have to go through heart surgery. This resulted in a series of small films being recorded on our phones and ipads and these are available to view on the BHF YouTube channel, they definitely show the reality of having to have major heart surgery.

Over the years Calum has always had the same heart surgeon, Massimo, and has built up a very special relationship with him. He has worked with him a number of times to promote BHF funded research that is being done at Bristol University. This work includes looking at growing heart tissue from stem cells which would then grow with the child, thus reducing the need for so many repeat operations. This is hugely exciting research and could benefit Calum and many other children in the future.

We already know Calum needs to have further surgery as he gets older so we are hugely grateful to the BHF for their support of so many research projects that could ultimately benefit Calum in the future.

Thank you to the Morris Family for allowing us to share their story.

https://www.bhf.org.uk/

 

Heart Family Support

Heart Families survey!

https://www.surveymonkey.com/r/QSY5ZQH

Counselling

Counselling is a talking therapy that involves a trained therapist listening to you and helping you find ways to deal with emotional issues.
Sometimes the term “counselling” is used to refer to talking therapies in general, but counselling is also a type of therapy in its own right.

What can counselling help with?
Counselling can help you cope with:
* a mental health condition, such as depression, anxiety or an eating disorder
* an upsetting physical health condition, such as infertility
* a difficult life event, such as a bereavement, a relationship breakdown or work-related stress
* difficult emotions – for example, low self-esteem or anger
* other issues, such as sexual identity

What to expect from counselling
At your appointment, you’ll be encouraged to talk about your feelings and emotions with a trained therapist, who’ll listen and support you without judging or criticising.
The therapist can help you gain a better understanding of your feelings and thought processes, and find your own solutions to problems. But they won’t usually give advice or tell you what to do.
Counselling can take place:
* face to face
* in a group
* over the phone
* by email
* online through live chat services (learn more about online tools for mental health)

You may be offered a single session of counselling, a short course of sessions over a few weeks or months, or a longer course that lasts for several months or years.
It can take a number of sessions before you start to see progress, but you should gradually start to feel better with the help and support of a therapist.

MINDFULNESS

What is mindfulness? Mindfulness is the basic human ability to be fully present, aware of where we are and what we’re doing, and not overly reactive or overwhelmed by what’s going on around us. While mindfulness is something we all naturally possess, it’s more readily available to us when we practice on a daily basis.

Thankful Tuesday

THANKFUL TUESDAY

We are always full of thanks and appreciation when anybody supports us. Today our thanks go to our regular givers, that’s Heart families and charity supporters (you know who you are) but especially today for two lovely ladies who have been saving up and decided to donate £400 to us to cover the cost of an iPad, cover and case. Unbelievably kind and selfless, thank you just isn’t enough!!
 

‘It’s not about how much you give or what you give, it’s about the heart you have behind it all’ ❤️

 
 
 
 
 
 
 
 

Heart Heroes Teddy Hugs

Gloucester heart charity finds furry way to raise awareness

If you go down to the woods in Gloucester – or any location in the city for that matter – you are sure of a big surprise!

Because to raise awareness for the work it does, Gloucester charity Heart Heroes is leaving knitted teddies out and about in area, and anyone who finds them can keep them and is then encouraged to post on social media.

The teddies are all safely wrapped, and have been donated by two keen knitters in Gloucester. Each teddy comes with information about Heart Heroes, which supports families with children who have heart conditions. There is also a little poem inside:

You have found a Heart Heroes hug bear,

Please can you go onto our Facebook page and share,

We all need a hug during this crisis

These little things are priceless.

Amy Ely, who has just joined Heart Heroes to help with admin and raising awareness, dreamed up the idea of leaving the teddies out and about, and also wrote the poem.

“The teddies were all knitted by a friend of mine and her sister,” said Amy. “When they found out I was joining Heart Heroes they asked if we would like them – we said yes please! They’d rather remain anonymous, but we would like to say a big thank you to them.”

The keen knitters have donated around 70 bears to Heart Heroes. Most will be kept back to give to the heart families and to the children while they are in hospital. The rest are being left around and about in Gloucester.

Kelly Cornish, who founded Heart Heroes, added: “We had a call from a jogger who had found a teddy and she said it had really made her smile. This is really about bringing a bit of awareness about what we do, and to share a little happiness in these difficult times.”

Amy is not the only new addition to the Heart Heroes team. Also joining the charity, as patron, is Zoe Trotman, Cardiac Ward Sister at Bristol Children’s Hospital, which cares for many of the region’s young heart patients. Zoe will also be able to spread awareness of Heart Heroes and connect families who need support.

Zoe said: “I was delighted to be asked to be part of Heart Heroes as their passion for improving the lives of children and their families who have to live with congenital heart disease is amazing. Heart Heroes is a great resource for me as a ward sister as I know I can contact them if there is anything the ward needs or I would like, to help bring a smile to a patient’s face or just make their stay in hospital a little more fun. 

“For many of the children I look after they will have to come in to hospital many times in their lives and it’s a key part of their journey, but the support needs to carry on once they go home. Being part of Heart Heroes helps me to build that link as it’s great to receive feedback and ideas on how I can make the hospital stays better.”

For more information about Heart Heroes and the work they do to support families in Gloucestershire and throughout the South West,  email to Kelly at email@heartheroes.co.uk.

Written By Jo Symth- Word worker

https://www.punchline-gloucester.com/articles/aanews/gloucester-heart-charity-heart-heroes-finds-furry-way-to-raise-awareness

National Suicide Prevention Day

We observe World Suicide Prevention Day each year on September 10. It’s a growing problem and the numbers tell a shocking story. Every 40 seconds someone takes their own life according to the World Health Organization (WHO). That’s about 800,000 people worldwide every year — although some estimates put that number closer to 1 million.

https://nationaltoday.com/world-suicide-prevention-day/

Heart Heroes is always here 💚