Get together with friends, family or colleagues for a brew and a natter on Wednesday 21st April and raise funds for Children’s Heart Surgery Fund to ensure we can keep supporting hearts in our region, for life.
Host your own CHSF Tea Party
There’s still time to organise your National Tea Day tea party this April! Download your free tea party resources including posters, colourful bunting and cake flags.
Now that we can meet with up to six people or another bubble in a garden or park, a cream tea is a perfect opportunity to enjoy a social event in the sun – just remember social distancing guidelines!
If you are self-isolating, want to invite a larger amount of people than the restrictions allow or want to invite people who live further away how about hosting an online Zoom tea party instead?
You could stage your own bake-off and compete for the title of ‘Star Baker’, see who can make the most creative table decorations or organise a quiz.
You could hold a good old fashioned raffle and play a few games or sweepstakes to raise a few more extra ££’s for CHSF.
You can download resources here.
Ask your guests to donate an amount to attend your tea party.
All money raised will fund the vital, life-saving work of the Leeds Congenital Heart Unit and support its thousands of patients and their families. Thank you.
DOWNLOADS
CHSF National Tea Day POSTER 1
CHSF National Tea Day POSTER 2
CHSF National Tea Day Video Call Background
Tea and cake not your thing?
We’ve got tonnes of other other ways you can raise vital funds for CHSF.
Choose your challenge at chsf.org.uk/events
Need help? The CHSF team are here to assist with all your fundraising. Just call 0113 831 4810 or email lisa.williams@chsf.org.uk Thank you.
This month we’re celebrating awesome heart warrior LILY who took on our Mountain in March challenge.
Lily stepped up to the challenge by climbing the height of Whernside on her stairs at home and has now raised over £2K for Children’s Heart Surgery Fund!
Lily’s mum Nicola told us a bit more about Lily’s story and why she wanted to fundraise for CHSF…
Lily was born on 21st March 2014 with a serious congenital heart defect known as tricuspid atresia and has undergone three major open-heart surgeries.
Her condition was detected pre-birth at my twenty-week scan. It was arranged for her to be born at Leeds General Infirmary so that she could be looked after by the Congenital Heart Unit and could undergo surgery soon after birth.
Lily underwent her first operation (the first stage of the Norwood procedure) at just seven days old. She then underwent the second stage of the procedure in October 2014 at seven months old.
Lily then had her third and final operation, the Fontan procedure, in January 2020 at the age of five. All three surgeries were carried out at Leeds General Infirmary by paediatric heart surgeon, Carin Van Doorn.
Throughout Lily’s hospital stays myself and my family stayed in accommodation within LGI which is funded by the Children’s Heart Surgery Fund to allow parents to stay close to their children during their operations.
It is of course vitally important that families are able to stay with their children during such difficult and challenging times.
Lily has also had the opportunity to attend CHSF events such as the annual Christmas party which allows the children to meet and befriend others with similar conditions.
I saw a post on Facebook that there was an opportunity to raise money for the CHSF by doing a virtual mountain climb and discussed this with Lily who was eager to do this.
Read more about Mountain in March here
She has completed a virtual mountain climb of Whernside which is the highest peak in Yorkshire by climbing up the stairs 284 times.
The only advice I can really give is to use social media to get the word out and ask your family and friends to also spread the word.
Lily’s fundraising was helped hugely also by family members getting their workplaces involved and asking their colleagues to donate.
We are incredibly grateful to Children’s Heart Surgery Fund for the help and support we have personally received and the fantastic service they provide for children and families in this region.
Lily’s health has improved drastically since undergoing the Fontan procedure last year and now that she is so much better she wanted to raise money for this important and valuable organisation.
Lily has now raised an outstanding £2300 for CHSF on her JustGiving page! Thank you so much to all Lily’s family and friends and of course to Lily herself for taking on this challenge!
Feeling inspired?
Could you step up to the challenge and start fundraising for CHSF? We’ve got loads of events to choose from at chsf.org.uk/events
Got your own idea? Want to try something different? We’re always on hand to discuss your fundraising at info@chsf.org.uk or call 0113 831 4810
More fundraising inspiration…
This #FundraisingFriday we’re celebrating two heroic heart families and a team of their nearest and dearest who have run across the country virtually to keep raising funds for CHSF!
LEO DIXON
Leo was born on 15th March 2014 at 37 weeks at a tiny 3lbs 4ozs after a difficult final stage of pregnancy.
Leo was in the special care unit when it was discovered that he had a hole in his heart – a VSD (Ventricular Septal Defect) and he needed a life saving operation at Leeds Children’s Hospital.
The surgeons would only operate when he weighed 10 pounds so in October 2014, after a six month wait, Leo underwent six hours of open heart surgery to repair the hole.
The operation was a success and Leo was monitored carefully for the coming months.
Leo is now six and is in junior school. He an active little boy and his doctors are happy with his progress.
We are amazingly grateful for the incredible work of the surgeons and without the support of Children’s Heart Surgery Fund Leo may not be with us today.
BONNIE MANTLE
Bonnie and her twin sister Maggie made a surprise arrival at just 27 weeks, both weighed a tiny 2lbs 3oz and spent 9 weeks in special baby care.
Whilst both girls were tiny and poorly, Bonnie seemed to be struggling more. Doctors discovered her heart was pumping blood into her lungs instead of round her body and after failing to respond to the treatment, she needed surgery to close the vein responsible.
She had a PDA ligation at just a month old – when she still weighed less than 3 pounds! Just days after surgery she was a different baby and started to catch up with her sister. Bonnie and Maggie are six now and apart from a tiny scar you’d never know what they’ve been through – total miracles!
The doctors and nurses were just truly amazing. The care and support we received was incredible. The support that Children’s Heart Surgery Fund give really makes the difference to families going through such a difficult time.
After hosting an incredibly successful charity ball last year, Leo’s dad Jonathan tells us more about the latest fundraising idea for Children’s Heart Surgery Fund…
Jonathan says:
Resulting from the success of the charity gala dinner on 22nd Feb 2020, held just before lockdown, we decided that we wanted to raise some more money for CHSF and another charity, Autism Angels.
Children’s Heart Surgery Fund supported both Leo Dixon and Bonnie Mantle as children which we will all be forever grateful for.
On 20th February this year, a group of 12 decided to virtually run across the country, along the route of Hadrian’s wall.
The event started at 7am and ran in a virtual relay style, on the hour until 7pm. Each participant running as far as possible in one hour.
We covered the 146km within the 12 hour period and would have technically got across the country in 11hrs 15mins.
Completing the challenge with me was: Conall Kelly, Will Cousins, Catriona Mantle, Simon Mantle, Lucy Wilson, Richard Metcalfe, Lynne Dixon, Toby Rake, Andrew Wilson, Andy Graham and Rob Graham – a big well done to us all!
The day was finished off with a virtual black tie dinner and some 40th birthday celebrations for me, to add to the evening’s fundraising fun! We are super proud to have earnt over £4K including gift aid to split between the two charities!
Jonathan with his son, Leo
Heart mum Catriona with twin daughters Bonnie and Maggie
We are so very grateful to the Dixon and Mantle families, and all their friends, who took part in this fantastic challenge to raise over £4,000.
Thank you!
#BecauseofYou
We are so very grateful to the Dixon and Mantle families, and all their friends, who took part in this fantastic challenge to raise over £4,000.
Thank you!
#BecauseofYou
Feeling inspired?
The CHSF team are on hand to talk through any fundraising ideas you might have. Give us a call on 0113 831 410 or email lisa.williams@chsf.org.uk
Already have an idea? You can register to fundraise using this form here!
Leeds drummer KriStix, has been raising money for Children’s Heart Surgery Fund through her popular online videos.
Out-of-work from COVID, Kristix has taken to social media to showcase her skills – gathering an fans across the globe and raising vital funds for CHSF in the process.
KriStix has been drumming in her conservatory
Hello! My name is KriStix and I’m a drummer/percussionist based in Leeds.
Before the coronavirus pandemic I was performing at weddings, parties, bars, and clubs and 2020 was meant to be my year.
I had celebrity functions booked, events in Ibiza, Spain, Italy, France, and America; it was the first time in my life I felt I was doing what I had been put here to do.
For me, like every other person in the hospitality industry, life as we knew it essentially ended with coronavirus. Work completely stopped, events we had secured were (rightly so) wanting refunds and with little to no backing from the government, a lot of people struggled.
Drumming got me up in the morning, motivated for the day and gave me something to look forward to.
To try spread the joy and keep music alive, I started livestreaming from my conservatory twice a week and I never expected to get much from it. How wrong I was!
It became not just something to help my own mental health anymore, but the DJs who gave me mixes and everyone who watched.
It quickly grew from a following of 400 to nearly 4000 worldwide in places such as Ibiza, Croatia, Australia, Zimbabwe and India – and we all became each other’s support bubble online. We truly have all got each other through this hard time and I talk to them often.
” The more I read about this amazing charity, the more it touched my heart and I thought ‘what can I do to help?’ “
When I saw the article by Joanna Wardill in the Yorkshire Evening Post, I couldn’t believe that I lived around the corner from Children’s Heart Surgery Fund and didn’t know they existed. The more I read about this amazing charity, the more it touched my heart and I thought “what can I do to help?”.
I now have this platform with amazing people and as charities are struggling so much with fundraising this year then maybe we can do some good. Plus, what sounds more like a heartbeat than a drum beat?!
It started with Wear Red Day and posting pictures every day with information about congenital heart disease. My first creative video was of Chris Rea’s “I Can Hear Your Heartbeat”.
After the amazing success of matching and upping my target from £100 to £200, £300, £500 and now £1000; I carried on fundraising for the entire month of February.
Kristix did really well promoting her fundraiser – making it into the local paper and even appearing on Heart Radio with Jamie Theakston and Amanda Holden!
My fundraising has been done through livestreams, three more videos and the amazing support of my followers which I can’t give enough thanks for.
Children’s Heart Surgery Fund are a truly incredible charity who deserve all the help they can get. I feel honoured that together we could do some good and make even a bit of a difference for some of those who deserve it the most.
Children’s Heart Surgery Fund are so grateful to KriStix and everyone who made a donation to her fundraising page.
This a truly inspirational example of using your talents for good. Thanks KriStix – you ROCK!
Would you like to tell your story? We are always looking for new families and fundraisers to feature on our blog!
Get in touch with the CHSF Marketing Team on marketingteam@chsf.org.uk
More fantastic fundraisers…
When heart hero OSCAR recently learned how to ride a bike, he decided he wanted to do a big bike ride to help raise funds for CHSF.
Oscar completed a fantastic 40 miles over the month of February, cycling around his local village of Kippax.
Oscar’s dad, Ken, tells us more about Oscar’s heart condition and why their family are so passionate about fundraising for Children’s Heart Surgery Fund…
Children’s Heart Surgery Fund supported us as a family when Oscar was born. He arrived at 5:30pm with undiagnosed TGA (Transposition of the Great Arteries) and after a few minutes of being here, was transported away to intensive care as he was turning blue. The original information we got was either he had an infection or there was something wrong with his heart. We didn’t get to see him again until 10:00pm when we met and were informed by Dr Hares of his condition. It was hard to take in and fully understand the extent of this condition, we were simply happy that the quick intervention from the nurses and midwives at LGI meant Oscar was still with us.
At nine days old Oscar was taken into theatre which lasted around eight hours. My wife and I remember walking around Leeds in what seemed like a daydream. Life was going about as normal while we waited to hear if the surgery had been successful.
When we heard he was out of theatre and stable, it was a huge relief although we were told the next 24 hours would be crucial to his recovery. It was indeed a very rocky evening and we can’t thank his surgeon enough. Miss Carin Van Doorn stayed with him until the very early hours to ensure he remained stable. He made it through the first 24 hours and with a few bumps over the next week, started to recover well. Each day we saw a difference in him. We could see that getting home was in sight. Now a healthy 6 year old, Oscar continues to amaze us with how much energy he has. He still has a restriction in his arteries, but his fitness is amazing. We don’t know if Oscar will need surgery in the future but knowing the charity is there if we need it is comforting. We have friends that have and will continue to need CHSF so ensuring they have the funds to do so is really important to us.
In our local village, there are a number of families that have been supported by Children’s Heart Surgery Fund. For us specifically, CHSF provided accommodation for us when Oscar was in hospital undergoing surgery and during his recovery. He also came home with a Katie Bear, medal and certificate. It was this moment we started to realise what CHSF did for the hospital and for families. Although we live in Leeds, we were truly thankful of being given accommodation as it meant we could be closer to him while he was in intensive care and on high dependency in Ward L51. We’ve noticed over the years that much more equipment for the hospital and play equipment for children has been provided by CHSF which is fantastic. Over the years since Oscar was born, we’ve done a number of fundraisers for CHSF from online quiz nights to hosting Christmas parties. We started by gathering donations at Oscar’s and his brother Luke’s christenings; taking part in Wear Red Days and the annual Superhero Walk.
As a group of heart families in the local area, we now get together and help each other with any ideas for fundraising. We’ve got an event that has been on hold since March 2020 and hoping as restrictions ease, we can get back to planning and running this towards the end of the year. Our advice to anyone thinking about fundraising is find something that you are passionate about doing. Be this a bike ride, a run, an event…and turn it into a fundraiser! Get in touch with businesses in the local area and post it on local social media pages. We were really surprised just how many people in our village got behind Oscar’s bike ride. We were unsure of whether he would reach the target he set himself but with the help of the village, he absolutely smashed it! To CHSF – a huge thank you for the support you gave us, the support you have given to our friends and the support you provide all families with. You have been able to provide funding for some amazing equipment over the years and the little things you do make the biggest difference to families.
We want to say a huge well done to the brilliant Oscar who raised a staggering £2375 for CHSF on his 40 miles cycle last month.
You should be very proud of what you have achieved – thank you Oscar! We can only do what we do, because of awesome people like you! #BecauseofYou
More from the blog…
Heart mum Stephanie and her friend Helen stepped up to the fundraising challenge to say thanks for the care heart hero George received at the Leeds Congenital Heart Unit.
Stephanie told us about her son George and how his care at Leeds inspired her to take on a sponsored stair climb for CHSF…
On 19 February 2014 my husband (Ben) attended a routine midwife appointment. It was then that we found out that our unborn baby had fetal Supraventricular Tachycardia (SVT).
We were in complete shock because my pregnancy had been straightforward up to that point. Two days later, we were meeting Dr Barwick at the LGI.
Over the next five weeks we got to know Dr Barwick. She declared our baby the most resistant unborn baby she had ever treated for fetal SVT!
Dr Barwick never gave up. After three types of medication, two stays at Jessops Sheffield, 11 nights in the LGI and lots of tears our baby’s heart rate returned to sinus rhythm on 27 March.
After four weeks of monitoring, George was born at 39wks on 25 April. We left hospital as a family feeling eternally grateful. To Dr Barwick, Sara Matley and their fantastic colleagues on Ward 12 and Children’s Heart Surgery Fund.
“We left hospital feeling eternally grateful”
George was discharged from the heart service completely just before he turned two. Since then Ben and I have been fundraising for Children’s Heart Surgery Fund, roping our friends in along the way!
Most recently my friend, Helen, and I completed a virtual stair climb challenge. We climbed the equivalent height of Mount Kilimanjaro on our stairs at home.
Thanks to our friends and family donating and supprting us in our challenge, we raised a fantastic £1002 for CHSF!
I’m completely overwhelmed by the generosity people have shown. I know that this money will help support other families, just like ours, going through a tough time.
A fantastic fundraising achievement! Thank you Stephanie and Helen for taking on a stair climb and stepping up to the challenge for CHSF! #BecauseofYou
FEELING INSPIRED?
Take on your own stair climb challenge by signing up to climb a MOUNTAIN IN MARCH. Do it all in a day or little by little; tackle it as a team or accomplish it alone, pick your peak and move mountains to raise vital funds for your heart unit. More info and sign up here
Mountains don’t move you?
We have a calendar full of virtual events and challeneges to get you fundraising for CHSF throughout 2021. See more…
Got a question? We’re here to help! Email events@chsf.org.uk or give us a call on 0113 831 4810
Heart warrior Xavier celebrated Christmas 2020 recovering from his second heart surgery.
Mum Heather tells us about Xavier’s time on the children’s heart ward and how that inspired her family to fundraise for Children’s Heart Surgery Fund…
My son, Xavier, had his second heart surgery (his first open heart surgery) at LGI on the 22nd December and we were in over Christmas.
My family and I want to thank you all at Children’s Heart Surgery Fund so much. You helped to make our experience and stay on the children’s heart ward so much better than we could have hoped for.
When we were given the opportunity for Xavier’s operation date so close to Christmas, we weren’t sure we had made the right decision for our family.
But in the end, everything that was provided for us (in addition to amazing surgeons, nurses and supporting medical team) made our stay more comfortable and our Christmas very blessed.
From our stay in the parent accommodation so we could be close to Xavier, to the gifts that Xavier and his sisters received during our entire stay, we appreciate you all so very much!
“Everything that was provided made our stay more comfortable and our Christmas very blessed.”
Xavier with his Katie Bear teddy and medal
After Xavier’s first surgery (2011), my husband did a 100-mile cycle ride to raise money for CHSF, we managed to raise £800 then. This time, he is planning on doing a longer cycle ride (coast to coast), hopefully in April if restrictions have eased.
We have already surpassed our goal of raising more than last time, and are hoping to raise even more if we can! We are inspired by our boy, what a warrior he is, and also by CHSF, who helps families like ours. We will let you know how it goes!
In any case we can’t thank the charity enough for all that you did for us. I can’t say for sure that Xavier won’t need another procedure in the future, but I feel reassured knowing that we belong to a greater heart family. You’re stuck with us for now!
With appreciation,
Xavier Street and family (Neil, Heather, Olivia & Jessalyn)
On #WarriorWednesday, we celebrate the amazing heart heroes we support in our region.
We tell their stories to raise vital awareness of congenital heart disease and recognise the care of the Leeds Congenital Heart Unit.
If you would like to make a regular or one-off donation to help fund CHSF’s life-saving work, you can do so here. Thank you.
More from the blog…
Thanks to your donations, one little boy on Ward 51 had a visit from a fellow superhero and a birthday to remember!
A Ward 51 doctor dressed as Spiderman
We know it’s true to say that small, less costly gifts can make all the difference.
And this is certainly true when the staff on Ward 51 made the 5th birthday of little Arkhan Alkhalifi all the memorable with the help of a fellow superhero!
Along with some lovely presents funded by YOUR donations, his special day was enhanced by a visit from the web-slinger himself with a very special cake!
The cake itself is a special one, made from meringue by LCHU registrar Sally Hall.
Arkhan is on a very special low-fat diet so this fit the bill perfectly!
We know that Arkhan was made to feel really special on his birthday and this is all down to YOU, our amazing fundraisers. THANK YOU!
A huge thank you Ward 51 for sharing this story and the fabulous pictures.
It is only because of your amazing donations that we can keep being there for heart warriors like Arkhan! #BecauseofYou
Feeling inspired? The CHSF Team are on hand to help with anything you need for your fundraising!
You can get in touch with us at info@chsf.org.uk or call 0113 831 4810
Our very first heart hero to be part of our #WarriorWednesday blogs is BELLA. Born in the midst of a pandemic, Bella has already fought her way through more than most.
Mum Megan tells us about Bella’s story and her journey so far…
Bella was born in July 2020 during the global pandemic and was our very own lockdown baby. She was the happiest little girl despite not being able to see extended family, other than through a window or socially distant in the garden.
She was always smiling and just loved being with her big brother, Bobby and watching him play. We thought we had our perfect, healthy little girl but sadly throughout her first four months of life, she never fed very well, and we noticed she was gradually losing weight.
After a course of regular weighing throughout November, the Health Visitor referred us to the doctors for further investigation. With an appointment booked the following day we received a call from the doctors saying we needed to go direct to Leeds Children’s Hospital where they would carry out a full health check.
Bella and I immediately made our way to hospital while my husband Richard rushed home from work to look after Bobby, as only one of us could be with Bella. After numerous assessments, we were told that Bella’s breathing was too fast, and she required a chest x-ray. After a short while, we were taken to a side room where it was explained that Bella had an enlarged heart, and she would need to be kept in hospital for a heart scan.
That night was long and agonising due to the uncertainty of what was wrong. The scan was carried out the following day and we received the devastating news that Bella had in fact got a large Ventricular Septal Defect (VSD) which is basically a large hole in her heart.
The consultant explained she would need open heart surgery to repair the hole as this was the reason that she had been unable to thrive. We were discharged that evening with the view to receiving a consultation appointment within the next couple of weeks to discuss Bella’s surgery further.
By the end of the following week, Bella had continued to lose weight so was readmitted and received heart scan the following day. This time a second consultant was called as there appeared to be some additional concerns on the scan. They had found another large VSD in our little girl’s heart – lower down but hidden away in a position they were struggling to measure and view properly.
Bella spent her first Christmas in hospital
We were then discharged on the understanding that Bella’s situation would be discussed in the surgeons and consultants weekly meeting, where they prioritise the surgeries for the upcoming weeks. We received a call later that morning and were advised to make our way immediately to hospital. Bella needed emergency surgery and was booked in for 8am the following morning, Wednesday 23rd December.
Again, due to the COVID restrictions only one adult was allowed so we decided I would be with Bella while Richard stayed at home with Bobby. We had an emotional goodbye at the doors of the children’s heart ward as we didn’t know if that was going to be the last time we’d all be together as a family of four.
Late on the evening of the 22nd, the evening before the operation, we had to have a meeting with the surgeon who would be carrying out Bella’s surgery. I FaceTimed Rich and the surgeon talked us through the risk of the operation and the complexities associated to Bella’s operation due to the location of the second hole.
This was the first real frightening moment for us both and the first moment it all started to feel very real. As difficult a conversation this was, we knew Bella would not survive without surgery and we all agreed this was her only option.
On the morning of the 23rd, I carried our beautiful, smiley little girl to the operating room. I’ve never cuddled her so hard before they put her to sleep in my arms. I placed her on the operating table and prayed I would see her again.
The longest nine hours of our lives past when we eventually received the call to say Bella was out from theatre and in intensive care. I rushed to see her and was relieved to see she had made it through the surgery. Her surgeon, Mr Pelella (the most amazing man I have ever met) proceeded to explain that her surgery had unfortunately not gone to plan.
Although the two large VSD’s had been closed successfully, when she was removed from the heart bypass, they soon realised something wasn’t right and so immediately put her back on for a second bypass.
This had led them to discover additional large holes at the bottom and behind her heart which subsequently meant her heart and lungs were still not able to work in unison together. The decision was made to put a banding around her pulmonary artery which reduces the workload on the heart and pressure on the lungs. Unfortunately, this means she will need further surgery in the future to deal with the additional holes and to remove the banding.
The following few days post-surgery were the worst days of our lives. Due to Bella needing a double heart bypass and her organs overworking her whole life, the news that was to follow was unbearable. We witnessed our little girl on more than one occasion fighting for her life. She fought so hard to stay with us and beat the odds and everyday seemed to result in more bad news for Bella. Not only had she had the whirlwind of open heart surgery, unfortunately the consequences of this surgery were life threatening for her.
Bella was on a life support ventilator for eight days. Her left lung collapsed three times which resulted in her having emergency procedures to put drains into her lung to ensure they were working properly. Also, her kidneys were failing which meant she was needing continuous dialysis to drain the fluids from her body.
Boxing Day morning we received the most devastating news that Bella had unfortunately had a seizure which, when rushed for a CT scan on her brain, showed us that she had very sadly suffered a stroke. This for us was just utterly heart-breaking. Our poor baby girl now had to fight even harder and her fight no longer is short term but most probably going to be for her whole life.
After Bella fought so hard to leave intensive care and started to build up her strength in High Dependency, 19 days from surgery they discovered a large sack of fluid that had built up behind her heart. This came as a huge blow to us as we were starting to see our little girl return and getting closer and closer to discharge.
After a couple of days of trying to clear the fluid with medication, the fluid wouldn’t reduce and was starting to make Bella deteriorate quite quickly. The surgeons and consultants made it clear that Bella would need another heart operation to drain the fluid.
Bella spent 25 days in the care of the Leeds Congenital Heart Unit
All the fears and anxieties instantly came back as we knew the complications Bella had previously had. Again, I had to walk our little girl down to the operating theatre and watched her drift off to sleep all over again. Thankfully, the surgery was a huge success and by the next day Bella was starting to show signs of improvements and was much happier in herself. We were regularly FaceTiming Daddy and Bobby at home and started to see the odd smile we had long waited for. After 25 days in hospital, we were eventually able to bring our little girl home; a day I thought at one point wouldn’t be possible.
Throughout Bella’s life, she has silently battled congenital heart disease but with a huge smile on her face. During her 25 days in hospital, she has shown a strength and a fight that I never knew would be possible. Every minute of every day she is showing us how incredible she is to still be here and continues to fight the biggest battle of her life.
As a family, we have decided that we want to raise awareness of congenital heart disease, especially in the current climate where, unfortunately for us, Bella’s condition was not diagnosed until her organs had started to fail.During these horrific and unimaginable few weeks, the only positive thing has been to witness how incredible the NHS are on a daily basis. We cannot thank every Surgeon, Doctor, Consultant, Nurse, Care Team, Physio, Therapist and anyone else who has been part of the most amazing team who has saved Bella’s life on more than one occasion. They have all cared and attended to Bella’s specific needs as if she were their own, with the upmost care and love for her.
Bella at home with her Katie Bear she received from Children’s Heart Surgery Fund after surgery
The only way we feel we can show our appreciation to the amazing team and cardiology department is to raise awareness and to do our bit to raise funds towards Children’s Heart Surgery Fund which supports the Leeds Congenital Heart Unit.
We are so lucky to have the leading congenital heart unit in the country at Leeds General Infirmary. We met a number of families who had travelled from all over the country just to be seen by the very top surgeons and consultants who are part of the team at Leeds.
To ensure the level of care continues, they are always wanting to improve the machines and facilities while also helping and supporting families of the children in hospital. Any time in hospital in such circumstances is awful but having to go through it as an only parent during the global pandemic has been heart-breaking. Being alone trying to support our poorly child was so difficult but made so much more bearable by the amazing nurses and support team from the CHSF charity.
Due to finding further VSD’s and at some point in the future the PA banding needing to be removed, Bella will need more heart surgery in the coming months/years. Her care will be ongoing for the rest of her life so the importance of doing what we can to support the cardiology department is so very important and close to our hearts.
We want to ensure that Bella and any other families in a similar situation can continue to access the very best care possible. That’s why we set up our JustGiving page for CHSF. We asked anyone who knows us or wants to show their support for such a brave, incredibly strong and resilient little lady if they could spare as little or as much as they possibly could – she is such an inspiration to us all.
This will help fund the care and support that Bella has needed and will continue to need to keep her battle going. Nobody knows how much they need the NHS until you are put into a situation where they are saving yours or a loved one’s life.
On #WarriorWednesday, we celebrate the amazing heart heroes we support in our region.
We tell their stories to raise vital awareness of congenital heart disease and recognise the care of the Leeds Congenital Heart Unit.
If you would like to make a regular or one-off donation to help fund CHSF’s life-saving work, you can do so here. Thank you.
More from the blog…
Heart warrior Rachael Adamcyk is mum to Henry, who also has congenital heart disease. Rachael is supporting Wear Red Day and told us…
The family were reunited recently outside the hospital after surgery
I am a mummy to a heart warrior and I am a heart warrior myself. My son and I have congenital heart disease and almost identical defects.
I’ve been aware of Children’s Heart Surgery Fund from a young age and can remember visiting the little shop at Killingbeck.
I had open heart surgery at age 5 and my son had his 4 months ago aged 3.
When my son was diagnosed at 6 months old we were keen to get involved with fundraising again as we already knew how much they do to help families like ours.
I think this year is our 3rd year of wearing red.
I’m organising a virtual collective “wear red” with as many of Henry’s friends as possible and his nursery are holding a Wear Red Day.
I’m also attempting to dye my hair red, which hopefully won’t turn out to be a disaster!
I hope that we can raise some money whilst having some fun!
A huge thank you to Rachael and Henry’s nursery and friends for their huge generosity in supporting Wear Red Day! #BecauseofYou
Feeling inspired? Sign up at chsf.org.uk/wear-red-day. The CHSF Team are on hand to help with anything you need for your Wear Red Day fundraising!
You can get in touch with us at info@chsf.org.uk or call 0113 831 4810