PARENTS VISITING BRHC

We have compiled a list of affordable accommodation and parking within walking distance of Bristol Royal Hospital for Children.

Hotels and Hostels

Nearby Parking

 

HEART FAMILIES…..YOUR PARKING SPACE, PLEASE USE THIS FANTASTIC DISCOUNT CODE HEARTHEROES15 FOR 15% DISCOUNT ON PARKING

https://www.yourparkingspace.co.uk/

Fantastic secure car park available near the children’s hospital.  Click the link below for more information.

 

Heart Heroes Features in Gloucestershire Live

‘The Gloucester charity helping this little boy’s family through life’s day-to-day challenges’

Read Gloucestershire lives recent report on the work we do HERE

News article courtesy of Gloucestshire Live

Naayt Eberle was born with a rare heart condition which meant he had to have open-heart surgery at just nine days old.

If you didn’t know any better you could be forgiven for thinking that Naayt Eberle is a healthy little boy.

Running around as much as any other toddler would, the two-year-old enjoys discovering the world around him and making new friends.

Except he isn’t a healthy little boy and his blue lips and heavy breathing belie his true strength.

“He just goes around like a normal little boy, to him it’s the norm. But he get’s breathless so easily,” his mum Rose said.

For Rose and her husband, Markus, their world has been taken a dramatic turn after Naayt – the youngest of four siblings – came into this world.

Naayt was diagnosed with pulmonary atresia with intact ventricular septum – a rare heart condition while he was in his mother’s womb meaning he has a small right side to his heart and a leaky mitral valve.

Just nine days after he was born in March 2017 had to undergo open heart surgery.

Markus was there when Naayt went down to theatre as doctors operated on him as they did all they could to give him the best life he could possibly have.

“The first operation I wasn’t really too sure how to feel. There was no emotion.

“I wasn’t worried for some reason, it’s so bizarre. When he had his second op that really hit me.

“I walked out of the anaesthetist’s room, suddenly I realised this is real,” he said.

Since then Naayt’s been making leaps and bounds in his health, but there’s a persistent, nagging worry at the back of Markus and Rose’s minds.

Markus added: “We have come a long way since then to be when he’s this and how he is. There’s going to be one more I don’t want to experience it I don’t know how I’ll be able to cope.

“We wouldn’t wish it on anyone.”

There is uncertainty over the amount of major invasive surgery which he could have to undergo in the future.

Rose said: “It’s hard for someone to understand but you consistently worry round the clock, whether he’s having a feed, or he’s asleep. There’s always a different scenario. You’re consistently on edge.”

It is well known for parents to carry drinks bottles, nappies, toys, wipes, food, and so many other things when leaving the house.

But for Naayt’s parents they have to carry life-saving medical equipment.

Rose said:“You’ve got to take things with you. He’s got a defibrillator just because of peace of mind he’s got it with him.”

Markus added: “A consistent worry. Every day.”

The immense pressure of having to care for a frail child around the clock has taken it’s toll on the Eberle family.

Despite all the help they have received from the medical staff they have found it difficult to keep on top of everything that daily life throws at them.

As well as caring for Naayt, and devoting a huge amount of time to him, they also have to share their time with their three other children: Kayden, seven, Rachel, 11, and Jake, 14, as well as two dogs.

It has meant that Markus couldn’t work due to the anxiety and stress created by Naayt’s health.

He said: “You just don’t know the daily struggles. It’s a real struggle. You’re trying to balance everything.

“Whether it’s him, the seven-year-old the two teenagers, the dogs or us two.”

And that’s where they got help from Heart Heroes, a Gloucester-based charity that works to provide support for families like the Eberles who have a child suffering from a heart condition.

Run by Kelly Cornish, the charity organises events for families from across the South West to have some respite from the difficulties they face.

What does Heart Heroes do?

Kelly has provided more detail about the amazing work that Heart Heroes does.

She said: Congenital heart disease is one of the most common types of birth defect, affecting up to eight in every 1,000 babies born in the UK.

“To you and I, that’s eight superheroes that need a little help from us. Children with CHD have the same needs as any other child.

They face challenges, such as making friends, understanding their body as they grow, school, play and where they fit in society.

“In addition, however, children with CHD/heart conditions must navigate a parallel world; a world of cardiologists, echocardiograms, electrocardiograms, pacemakers, defibrillators and regular surgery.

“No matter how strong their superpowers may be, they need our support to help negotiate this maze of medical intervention and find happiness in the world outside.

“At Heart Heroes, we have the power to make that difference. With your help, we support families of children living with CHD/Heart conditions through a range of family events, fun activities and play therapy. 

“Together, we can help our Heart superheroes soar to the heights of happiness and joy that they deserve.”

To find out more about Heart Heroes visit their website by clicking here.

A skydive has been arranged where hundreds of people hope to raise thousands of pounds to help provide a UK holiday for families later this year, in which Rose will take the plunge.

Ollie’s Wheels Are On Their Way

It was during the 20-week pregnancy scan that Ollie’s parents were made aware that he had a heart defect. Ollie was born in 2005 with Hypoplastic Left Heart Syndrome- a condition where the left lower pumping chamber (or ventricle) is missing, meaning that his heart is unable to pump or circulate blood around the body effectively.

 Just five days after he was born, Ollie had his first open heart surgery operation. By the time he was three-years-old, Ollie had undergone three major open-heart surgery sessions. Whilst he occasionally struggled with certain activities, was slower than his peers and often unable to engage in many physical games, Ollie was generally a happy child, and was accepting of his health challenges.

However, at the age of ten, Ollie contracted plastic bronchitis, a rare lymphatic flow disorder that causes severe respiratory issues. The disorder triggers lymph fluid build-ups and forms plugs known as ‘casts’ which blocks the airways, making it difficult to breathe. “The doctor had only ever seen one case of plastic bronchitis with a child before” explains Ollie’s mum, Katherine.

Last year Ollie started coming along with his friends to one of The Door’s open access youth clubs at The Pod in Stonehouse and has since been taking part in mentoring too.

Ollie’s limited mobility was affecting his school life and social life; through talking to his mentor they began to come up with a plan to fundraise for a trike that would help him get around more independently.

Ollie’s Mentor tells us “Mentoring Ollie has been great.  We just talk.  And talk!  I’ve learned all about gaming, at which Ollie is – literally – a Master.  I’m full of admiration for Ollie.  He is facing some major challenges in his life and despite them he is fun, curious and actually quite a wise person.”

Little did they know that thanks to the amazing community spirit of the young people at The Door’s Youth Clubs, donations from the local community and financial support from Heart Heroes that their £2000 target was well inside their reach!

“I’m amazed and delighted at how quickly the funds were raised for Ollie’s electric trike.  It just goes to show that there’s an enormous pool of goodwill out there.  He can now be far more mobile and the exercise will help his general fitness.”

Kelly Cornish from Heart Heroes explains “we read Ollie’s story on Social Media and as a charity that supports children living with Heart conditions, we wanted to help.

The young people and volunteers at The Door had raised a fantastic amount already, so our small contribution meant that Ollie could have his trike sooner. And we’re so pleased to be celebrating with them this weekend” 

Ollie’s Mum Katherine says:

“The tricycle is important because Oliver doesn’t have the energy to ride a normal bike but he also needs to keep himself healthier with exercise due to his Conditions. Ever since Ollie knew the trike had been ordered he was excited and increasingly to the day it was delivered. He has been out on it several times and the assistance it gives him is noticeable. 

It was something that most people take for granted i.e riding a bike that Oliver simply couldn’t do. It will make a massive change to his ability to get out and about. We can only thank everybody involved in whatever they did for making this happen.

Ollie says “riding the Trike is so much easier than a bike or walking. I can go much further and not get out of breath. When I want a rest the motor helps do the work for me. It will be so much help in getting out and keeping up with my friends and family. I am stunned at how many people have helped make this happen, but really happy”

 

The door

The Door:

The Door’s mission is to bring hope into the lives of young people and their families, through unlocking potential and opening opportunity so their past does not define their future. Motivated by the Christian values of hope, forgiveness and prayer The Door delivers its services at the heart of local communities, seeking to engage stakeholders from the bottom up. We have in-depth knowledge of the local area and its people; we tackle the root causes leading to enduring results and are prepared to deal with complex issues that other agencies shy away from. The Door travels with people for the long term – walking alongside them, carrying the burden and never giving up.

For more information about The Door’s Youth Clubs visit thedoor.org.uk or find them on Facebook @TheDoorStroud or on Instagram