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.

Heart Heroes Celebrating 2 years!!

It’s two years since Heart Heroes was created. Never have we looked back and thought this in not needed/wanted. Everyone met along the way, be it Heart children, families and supporters everyone has been simply amazing. Thank you so much!! Kelly (Founder)
 

A Special thanks to our trustees

Peter Cornish
Zoe Mansell

Rose Eberle

 

Our volunteers

Sarah Dingwall
Jo Roberts

Ella Stanley, Nicola Morris

Our Young Volunteers

Tilly

Evie

Josh

Jake

 
Patrons 
Gemma Keir
Zoe Trotman

and now our first employee Amy Victoria Ely

Local business support
 
Onymous
Local business Rocks
Holly Siddall-ILex Accountancy 
Alan- B creations
Kerry Richardson
James & Mel at JB event Hire
Campaign For My Brain
Z’s Beautique
Theresa Fisher- Tesco Quedgeley Community Champion
Abi Griffith
Chris Lewis
The Club, Tuffley Park
The Kings School, Gloucester
Omni
Vicki Lynn/Orchard Fundraising 
Sandersons
Fundzzle
The Old Station Nursery, Gloucester
 
A huge thank you to The Bristol Children’s Hospital Cardiac, Dolphin Ward and The CHD Network South West for their support too.
 

All your continued support is always really appreciated ❤️ thank you.

 

Heart Journey

‘This is Finley, he is 6 months old and has spent the first 5 months of his life on PICU in Bristol Children’s hospital. I had a normal pregnancy, only issues we had were reduced movements so when Finley was born everything seemed fine. That was until a few hours later when the midwifes noticed Finley was turning grey. They took him away and did some observations on him, his sats were below 50%. Hours passed by before we were told anything but after a while we were told Finley had a heart problem and was being transferred from Swindon to Bristol. They didn’t know what heart condition it was so we didn’t get much information. Myself and Ben were not allowed to go see him for about 5 hours. 

It was such a long wait but then we got taken to see him in SCBU and to talk to the doctors from Bristol who told us he probably wouldn’t make the ambulance ride. By the time we did get to see him he was already in the transport incubator ready to go!

We followed behind in the car and they when we got to Bristol we had to wait in the quiet room where we were told that Finley had TGA. (transposition of the great arteries) Mr Serban Stoica sounded very positive about his surgery so at 4 days old he went for his switch. A surgery which we were told would take 6-8 hours ended up taking 12 hours. Of course very worried we just knew something had gone wrong. After the surgery our surgeon came out to tell us that the switch went well but there were more complications and Finley came out of theatre on ECMO.
 
After 5 days we managed to get him off, though unplanned due to the machine clotting he managed off it better than everyone in Bristol expected. Things were starting to look well he was taken off the ventilator and IV meds were slowly coming off but he would then take a turn and be out back on the ventilator. This happened a few times but he took a bad turn at the end of April where he nearly died. He went down to the cath lab where they discovered that he had no coronary arteries to the left side of his heart.
 
We were told there was nothing to be done for him. We had a meeting with a few consultants, cardiologist and surgeons who told us our options. This was the worst meeting of our lives but then someone suggested stem cells. A few of the faces disagreed with this but we wanted to know more. a surgeon called Professor Caputo came to talk more about this stem cells with us. He explained that it has never been done in the U.K. before for how we need it to be used. It has been used for other things but this treatment would be purely experimental. What he wanted to try was to inject these stem cells into the left side of Finleys heart to help re grow his coronary arteries. There was no question about it, we had to try. So a week later we got the go ahead from the directors of Bristol children’s hospital and the stem cells were on their way.
 
They made it very clear from the beginning that we had no idea what was about to happen, how it would affect him and if it was to work we wouldn’t know about his future. He was in surgery for about 4 hours and came back fine. All went as well as it could have. He was soon making improvements and
There was talks about giving him a tracheostomy incase he didn’t cope of the ventilator but me and Ben wanted to give him a chance and see if he could cope since having these stem cells.He took a very slow wean off of his IV inotropes and his ventilator and within 3 months he was like a different child.
He has made so much progress and he’s happy at home. All of his check ups and perfect and everything seems to be heading in the right direction. So it seems that these stem cells have done exactly what we wanted them to’
We love being asked to share heart journeys and this certainly is an incredible journey .

 
 
 
 
 
 
 
 

Heart Hero support

Heart Hero Esmé update….Esmé had a scan on the veins in her neck to check they’re ok to use for the Hickman line. She’s had her Covid and MRSA swabs done and She’s had her bloods taken. She goes down today for 8 am for a heart scan to check she’s able to have the chemotherapy then in the early afternoon she will have her first lumber puncture done followed by chemo into her spinal fluid. Then straight after she will have the Hickman line inserted. We speak to the specialist tomorrow about the severity of the leukaemia and how they are able to treat Esmé.
 
Where does your money go when you donate to Heart Heroes?
 
 ‘Thank you so much for the iPad and accessories to go with it. It arrived when I wasn’t home but was left with a neighbour so we got it this morning just as we were leaving. Thank you so so much. It’s been a massive hit as we have had RAARAA playing every time she had something done and it made her so happy! First time that she didn’t cry with her bloods too! Can’t thank you enough for the brilliant idea, I’d have never thought Of anything like that! We’ve strapped it to her cot and she’s loved having lullaby bedtime music playing. It’s amazing!’

Hidden Disabilities Scheme


A hidden disability is a disability that may not be immediately obvious

Hidden disabilities don’t have physical signs and include learning difficulties, mental health as well as mobility, speech, visual or hearing impairments. They can also include HEART CONDITIONS, asthma, COPD, and other lung conditions as well as chronic illnesses such as renal failure, diabetes, and sleep disorders when those diseases significantly impact day-to-day life.

Living with these conditions can make daily life more demanding for many people. They affect each person in different ways and can be painful, exhausting, and isolating. Without visible evidence of the hidden disability, it is frequently difficult for others to acknowledge the challenges faced and as a consequence, sympathy and understanding can often be in short supply.

We are pleased to be supporting the Hidden Disabilities scheme 🌻💚

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