Inspiring hope and enabling Heart Heroes to reach their potential.
Inspiring hope and enabling Heart Heroes to reach their potential.
Below are just a handful of our wonderful and inspirational Heart Heroes, please click on the boxes below to learn more about each of them.
We would love to share more stories with our supporters, if you would like your child to feature on this page please email: info@chuf.org.uk
Kaylee became the first surviving baby in the UK to have a Heart Transplant in 1987 at The Freeman Hospital at only months old.
She is the longest surviving baby in the UK to receive a heart transplant and second in the world. Kaylee has achieved many milestones and is a normal happy girl who enjoys dance, sewing, athletics… and partying just like her friends!
Kaylee has taken part in The British Transplant Games since she was 2 years old as well as competing internationally at The World Transplant Games. In 2013 she became a world champion in the 4x1 team relay at the South Africa games which she describes as a ‘dream come true’. CHUF is proud to fund families wishing to attend The Transplant Games so that more children just like Kaylee can have their dreams come true.
On 14th of October 2017 Kaylee celebrated her 30th anniversary with a walk over the Millennium Bridge ‘Kaylee's walk of life’. The event was to raise awareness of organ donation and encourage people to sign the organ donor register & talk about their wishes.
If you would like more information about organ donation or wish to sign up to the organ donor register, please visit www.organdonation.nhs.uk.
Chanel is now 6 years old and the oldest ever living person born in the UK with a condition called Hypoplastic Left Heart Syndrome with an Intact Atrial Septum.
The combination of the two conditions meant Chanel has needed several open heart surgeries, the first being at just minutes old. Chanel made medical history; being the youngest ever open-heart surgery patient in the world.
She had a stroke at just 3 weeks old which affected her left side and resulted in cerebral palsy, she then suffered yet another stroke, meaning she's had to learn to walk twice over- but nothing stops this little superstar!
Chanel was recently shortlisted for Young Charity Champion at the 2019 North East Charity Awards for all of her dedication to fundraising for CHUF - even making and selling bracelets to give something back!
Chloe was first diagnosed with dilated cardiomyopathy at the age of 12, presumed to have been caused by chemotherapy she had aged 2.
She became very unwell in August 2014 and was admitted to hospital and told she would need a heart transplant.
Despite this, Chloe continued to attend school and continued meeting with friends.
From then, Chloe deteriorated rapidly and by November 2014 was taken to intensive care where she was fighting for her life waiting for a transplant.
She received the best gift ever and was transplanted end of November 2014.
It hasn’t been all plain sailing for her, but Chloe fights everything with sheer determination. She continued to study and managed to pass her GCSE's. She enjoys taking part in The British Transplant games and most recently she has sailed from Newcastle to Aberdeen on the Lord Nelson tall ship. Again, not an easy sail!
Currently she is looking to do some voluntary work in a nursery as she loves working with children.
Chloe was just 6 months old when she went into heart failure after a virus attacked her heart.
After spending 2 months in her local hospital in Leeds, Chloe was transferred to the Children's Heart Unit at Freeman Hospital, where she quickly deteriorated and was rushed onto a mechanical Berlin Heart.
After 7 weeks, Chloe received her new heart at just 10 months old. Chloe has had a few obstacles to overcome since transplant, but she is doing really well and especially loves playing with her friends at school and dancing with her big sister.
Elodie was diagnosed with Dilated Cardiomyopathy at 3 Months old. She was placed in an induced coma for 3 Months at her local hospital in Bristol before being air lifted to Freeman Hospital in May 2014.
She was placed on a mechanical Berlin Heart for 4 weeks resulting in multiple cardiac arrests and blood clots which lead to stroke. She was also left with only half of her bowel.
Elodie's call came in at eleventh hour when she received a Heart Transplant in July 2014.
Elodie and her big sister Freya were thrilled to welcome their new baby brother Austin in 2017.
Lily was born with a chamber missing in her heart, and would need a series of heart operations before the age of 3 years old. As soon as she was born in 2006 she was taken straight to the Children's Heart Unit at Freeman Hospital.
Lily is now 11 years old and is doing well at school, she has lots of fun time with her little sister Betsy. None of this would have been possible without the specialised expertise and dedication of the Children's Heart Unit at Freeman Hospital.
At 2 year's old, Linzi suffered from leukaemia and needed a bone marrow transplant. Thanks to her older brother James, she was able to make a full recovery after receiving his bone marrow donation, but by the age of 8 she was diagnosed with Dilated Cardiomyopathy and needed a heart transplant.
11 years on, and with many thanks to her brother and her family she is now aged 20 and at the end of her first year of University.
She is achieving distinctions across all of her subjects with hopes of graduating to become a self-employed Graphic Designer.
Linzi also recently received the gift of a kidney transplant and is a shining example of how Organ Donation saves lives!
Louisa received a heart transplant aged just 5 months old on 23rd December 2007, she previously suffered 2 strokes in November 2007 whilst awaiting a transplant.
Last year aged 8 she was also diagnosed with epilepsy which has been extremely difficult due to her epilepsy medication interfering with her transplant medication.
Despite the whole family going through a very hard and worrying time she managed to come 1st in a regional dressage competition and qualified for the national championship were she came 2nd having ridden for less than twelve months. The teachers were so pleased with her progress that they nominated her for RDA awards ceremony in London.
Louisa also recently received a bravery award from Bravehearts North East.
Luna was born with 2 congenital heart defects in separate chambers of her tiny heart and underwent open heart surgery 5 days before her 2nd birthday.
Luna's family have since held two hugely successful ‘Red Sky Ball’ fundraising events raising close to £110,000 for CHUF!
The Petrucci family have more events planned in the future and would love your support. If you would like more information about Red Sky Brunch this September or Red Sky Ball 2018 please get in touch!
With the support of Luna’s family and their fundraising CHUF were able to secure ‘Luna the Snowdog’ as part of the North East trail late last year, she now has a permanent home on the Children’s Heart Unit on ward 23 at Freeman Hospital!
Her road to recovery was long and arduous, but eventually Martha started nursery school and has gone from strength to strength.
in 2016 Martha attended her first Transplant Games funded by CHUF and is attending again in 2017.
She also attended her first skiing trip in March through 'Tackers' an organisation providing adventure camps for transplanted children. This was a wonderful way to celebrate her 10 year transplant anniversary.
Martha is a happy, healthy and vibrant little girl whose life was made possible by the Children's Heart Unit at Freeman Hospital, its dedicated medical team and a selfless family who said yes to organ donation!
Sophia was born in December 2013 following a normal uncomplicated pregnancy but by the next day it was apparent that she was unwell.
She was rushed by ambulance from her local hospital near her home in Barnard Castle to the Children’s Heart Unit at Freeman Hospital where she was diagnosed with several major heart abnormalities.
At just 7 days old Sophia underwent major open heart surgery to repair all of the abnormalities in her heart and allow her heart to function normally. The surgery was successful and amazingly she was able to return home only 9 days after her surgery.
Sophia's heart journey continues as she will require further open heart surgery as she grows.
Sophia is now 3 and a half years old and is a very happy, bright little girl who lives a totally normal life at home with her younger brother, she has no idea what a miracle she has been through.
When she is old enough to understand she will be told all about the amazing care and expertise she was lucky enough to receive at the Freeman Hospital and how her mum and dad can never thank the surgeons, doctors and nurses who cared for her enough.
It is truly priceless…
Sophia’s family held a ball last autumn raising over £5K for CHUF!
Harry is 10 years old and was diagnosed with congenital heart disease at 5 weeks old.
He underwent immediate heart surgery and since then he has had a further 4 major heart operations at Freeman Hospital.
Harry’s heart condition does not stop him enjoying life.
He loves his football and is a keen cricketer.
Harry’s dad Neil is a member of The ‘CHUF’n’Builders’ committee, who have to date raised £50k for CHUF.
Ava was a very fit and happy girl playing football and doing gymnastics until mid-October 2016 when she felt unwell and complained of a sore tummy. Her parents took her to her GP who referred her to The Royal Victoria Infirmary in Newcastle.
Her family soon learnt that the problem was her heart and she was taken by ambulance to The Children’s Heart Unit at Freeman Hospital where she was admitted to the High Dependency Unit. After taking medication her condition didn’t improve and she was soon moved onto Intensive Care.
On 12th November 2016 Ava received the gift of a new heart and by early December she was able to go home. Ava is blooming and is back at school, has joined brownies and has even started swimming again!
During her time in hospital Ava loved visits from the play team (her bed space was covered in arts and crafts) and spending time in the state of the art play room which was fully funded by CHUF.
Zain's Story - as told by his mum...
Zain was born in February 2014 with a number of congenital heart defects. Since then he has had 2 major open heart surgeries and several other cardiac procedures. He will have another major operation and then eventually would need a transplant.
But for now Zain’s worries are about starting school and telling his little brother off when he is being naughty. Zain loves to make jokes and do silly faces. In his last hospital stay after his operation, Zain could not feel comfortable in anyway and then came the Clown Doctors. It was the first time in days that he giggled, even though it was hurting him but the smile on his face was infectious.
He loved solving the puzzles in the play room on the ward and nursery nurses were always trying to find him some new ones. The best thing about Children’s heart unit is that they look after the child and the whole family. They know what you are going through as parents, siblings and as a family. Most importantly their support does not stop outside the ward and that makes lives of Heart-Hero parents that bit easier.
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Zain’s nursery, family and friends have been fundraising for CHUF for the past 3 year and share a special bond with Children’s Heart Unit. Every year, the family visits the ward with presents for the children. You may have seen Zain on CHUF's Facebook page on Christmas Day in a little video wishing everyone a very merry Christmas!
Daniel was diagnosed with Truncus Arteriosus at just 10 days old and had his first surgery at 7 weeks old. The first few weeks before his operation were difficult, in and out of hospital and he struggled to feed. After his first operation he made really good progress, starting school, playing sports and learning to swim up to stage 8!
He underwent his second open heart surgery on 13th June 2017. The staff on PICU said he was the most chilled patient they had ever seen! A year later, he is back on top form, playing cricket for Percy Main cricket club, representing his school (Cullercoats Primary) at cricket and hockey and just generally loving life and full of energy!
Jensen was born with Double Outlet Right Ventricle (DORV) in December 2017 and had his first heart operation at just 6 months old at The Children’s Heart Unit at the Freeman Hospital. Described as a “happy little chappy that never stops smiling” by his parents, he was out of hospital within a week after his operation and is continuing to do well at home.
George was born in 2012 with Congenitally Corrected Transposition of The Great Arteries (CCTGA) and underwent an operation at just six days old. He’s had several further heart and stomach operations, including 15-hour surgery on his first birthday and has a pacemaker fitted.
George was personally invited to Professor Stephen Hawking’s memorial service in Westminster in June 2018. At the service George met several stars including Benedict Cumberbatch, Piers Morgan, Charlotte Hawkins and David Walliams, along with astronaut Tim Peake!
Thomas was born with a large hole in his heart which was repaired at Freeman Hospital at just 10 months old.
Now a healthy 11-year-old boy, a massive wrestling fan and recently won a Brave Hearts of the North East award for his courage along with VIP tickets to the wrestling where he met his favourite wrestler Becky Lynch!
You'll always see Thomas with a smile on his face. Thomas’ family have ran many events for CHUF over the years i.e. Halloween and Christmas discos, raffles and sponsored zombie walks, they continue to support CHUF in the future and recently took part in the CHUF toddle & family fun day at Close House. Thomas has also recently started secondary school
A few minutes after Alaysia was born, she was immediately taken to the Special Care Baby Unit then by ambulance to The Freeman Hospital. When Alaysia’s parents arrived at Freeman they were met by Dr Crossland who advised they were unsure what was wrong with Alaysia although it looked like heart disease.
For the first few days, Alaysia’s family worried tremendously not knowing what was wrong. They were later told Alaysia had suffered a heart attack at birth which damaged the left side of her heart. After just one week, Alaysia was able to go home with her parents as her heart condition improved thanks to the care at Freeman Hospital.
Alaysia’s Mam told CHUF “The care Alaysia received was amazing and at that time when we expected the worst, the staff were so caring and certainly watched over her. I can't thank CHUF and Freeman Hospital enough. Alaysia enjoys singing, dancing and being pampered, she also loves spending time with her friends”
"I hope this inspires all the families with poorly children with various heart conditions, that your children can and will lead as much as a normal life as possible like I have. I would say that I am a very lucky man and am married to my beautiful wife, Marina and we are fortunate to have two perfectly healthy children aged 12 and 14.
On the 7th August 1975, aged 3 years old I had my first major open heart surgery at Shotley Bridge Hospital, performed by Mr Blesovsky and his amaizing team. My parents were told that I only had a few hours to live and to expect the worst as I was so poorly. 46 years on and I am fitter than ever, I don't drink alcohol and I have never smoked. I enjoy exercising and keeping fit, my favourite activities are cycling, (between 50-70 miles each ride), jogging on my treadmill in my house and I used to do Karate for two years.
As a child I missed out on a lot of early school years due to being poorly. After my second operation in 1981 when I was 8 years old, I remember gaining my blue flash, 25m swimming award, which was a great achievement as I used to get out of breath and my lips would turn blue through the lack of oxygen going round my body. By the time I left senior school, l had the highest swimming award and I was playing football for the school B team.
I have worked since I was 11 years old, (a paper round as kids did back in the 80's for pocket money). I studied catering at college and have worked in the industry ever since.
Back to my other operations...
On the 2nd March 1981, aged 8 years old I had my second major open heart surgery. Total correction of Tetralogy of Fallot, this time it was at the Freeman Hospital, again performed by Mr Blesovsky and his amazing team. My latest and third open heart surgery was on the 9th August 2008 aged 36 years old, Pulmonary Valve Replacement (25mm homograft) and patching of the right Pulmonary Artery ,again at the Freeman Hospital, this time performed by Mr Griselli and his amazing team. Mr Griselli told me I was the first adult patient that he'd performed open heart surgery on as he only operated on children's hearts, but he operated on me as I had a child's heart disease.
At present, I still go to the Freeman Hospital once a year for my check up (or M.O.T as I call it), everything is good, but one day I will probably need another valve replacement. I have given my permission for my medical records on Tetralogy of Fallot to be used in a five year study, hopefully this will help children in the future with heart conditions like I have.
I would like to join in challenges to raise money for CHUF and I would like to help families and their children to achieve their dreams like myself and my family have, through the Freeman Hospital. If it wasn't through all the dedicated and professional staff, I would not be here today.
I hope my story can inspire families.
Best wishes,
Steven Philpot"
Jess was born in 2001 with Tetralogy of Fallot, undergoing her first major operation at just 2 years old. Jess was later fitted with an Apicoaortic Conduit and monitored regularly, until October 2014 where she'd outgrown the conduit and had it replaced with a larger one. Jess is now studying science at college to hopefully go onto further education and study Paramedic Science at university.
Jess is one of our youngest volunteers and a very dedicated one at that. At only 17 years old, Heart Hero Jess has been volunteering for CHUF since November 2017 and has continued to support CHUF at our Christmas Party, Toddle & Family Fun Day and also volunteering in the CHUF shop!
Jess explained "I originally wanted to volunteer for CHUF to give back after everything they have done for me, but its also an amazing place to be, surrounded by so many incredible people. A place to meet new people and learn new skills."
Seb was born in 2009, 15 hours after birth he was diagnosed with a Congenital Heart Defect (CHD) called Tetralogy of Fallot which, if left untreated, would mean he may not see his second birthday. Seb started to become ill earlier than expected and, at just four months old, the decision was taken by the surgical team at the Freeman Hospital to perform emergency surgery. After six hours in theatre, a rollercoaster week in Paediatric Intensive Care Unit (PICU) and four weeks on Ward 23, Seb's family finally got to take him home. Fast forward to 2019, Seb loves helping others, recently supporting local food banks at Christmas and continues to do well in Taekwondo and at school.
Born in 2018, Logan had his first surgery on 27th February 2019 at just 5 months old. Logan's surgery involved the closure of a large VSD and a valve repair which saw him out of PICU in as little as three days. Logan love's his healthy food including salmon and spinach and loves to watch Mr Tumble and Mr Bean.
At around two months old, Neive developed a strange cough which her parents could not explain, and because of COVID-19 restrictions it was difficult to see a professional for a second opinion.
On January 24th Neive became very sleepy, wasn't drinking her milk and generally not herself. Her parents called 111 where they were sent to an out of hours doctor who advised them to go straight to A&E.
Upon arrival at the RVI Hospital in Newcastle, they were greeted by numerous doctors and nurses doing various tests and checks on baby Neive. They suspected it was her heart and a specialist was immediately called over from the Freeman Hospital. At this point the specialist discovered she had ALCAPA (Anomalous left coronary artery from the pulmonary artery) and the family were sent to the Freeman Hospital, Pediatric Intensive Care Unit.
On Tuesday 26th January, Neive had her first open heart surgery at just three months old to repair the ALCAPA which took over nine hours and as her Mam, Laura recalls “The longest day of my life”
Since her first open heart surgery she has had seven more operations including a tracheostomy. Just three months down the line and amazingly Neive has come on leaps and bounds, she is now trache free and was able to go home on Monday 19th April.
“I am so thankful I listened to my instincts and I’m so grateful for the staff at the Freeman on PICU & ward 23 for saving our baby. “
Theo Curry was born in 2020. His heart condition was diagnosed during pregnancy; Transposition of the Great Arteries, Double Outlet Right Ventricle, Hypoplastic Aortic Arch and a VSD. He was born at 29 weeks, weighing just 3Ib. He spent 7 weeks in the Royal Victoria Infirmary before being transferred to Freeman Hospital. When he was first admitted to Freeman's Theo developed Necrotising enterocolitis that required emergency surgery and partial bowel removal.
Due to Theo’s heart condition, his body was unable to heal and he became extremely unwell. Theo’s cardiac surgeon Dr Fabrizio de Rita made the decision to perform all three of Theo’s cardiac surgeries at once and after two months of this surgery, Theo was discharged home for the first time.
Theo has needed further operations and procedures since 2020 and his Mam, Yasmin told us ‘we are extremely fortunate that because of CHUF we have always been able to stay close to our son whilst in hospital. CHUF provide essential equipment on the wards, support the most amazing play specialist nursing team and so much more, the list is endless and we are truly grateful for all the help we received.’
‘Because of CHUF we were able stay on the hospital grounds close to our son, we received help towards the cost of staying long term in hospital, along with many other things, we are truly grateful for all the help we received.’
Millie was born in August 2021 with 3 holes in her heart and a narrowing of her artery where she will require open heart surgery.
Millie’s family organised a Facebook fundraiser for CHUF in February 2022 and raised a huge £2,750 with £1,000 matched funding from Millie’s Dad’s employer, Arnold Clark – amazing!
She enjoys eating, saying her first words “Mama and Dada”, rolling on her tummy and trying to crawl. She also loves her 3 cats Bob, Pluto, Jet and her dog Buddy.
Louie Crawford was diagnosed with a large hole in his heart ( VSD) and a leaking valve and at 2-3 months old where he began to lose weight and had a pale appearance although hard to diagnose at first as he was a healthy baby when he was born. Doctors eventually found he had a murmur when his parents took him to
A&E but they wanted further tests and after months of preparing and hoping the hole would close naturally as suggested by the hospital this wasn’t the case and Louie was beginning to go into heart failure, so the only option was to have open heart surgery. The open heart surgery was performed at the Freeman Hospital in Newcastle. The surgeon noted his heart was the size of a tangerine and the hole was as big as a 50 pence piece which was very big for his size. His parents said " the care was unbelievable and we were also very lucky to have been able to stay in Scot house so we could be close to our baby. The accommodations works entirely from donations from The Sick Children’s Trust. We finally had his heart fixed the date was 21st of July 2016, Louie is an absolute star and loves running! He is the very fast and plays football at school! He is a huge Marvel fan and his favourite is the Hulk! His scar is a reminder of how strong he is. Louie is one of a kind and we are very proud of him"
One of our amazing Heart Heroes, Beatrix, has been on the Children’s Heart Unit since spring 2022 awaiting heart transplant surgery. In that time Beatrix and her family have been doing an amazing job, working tirelessly to raise awareness for Organ Donation and how important it is for children like Bea, who’s future relies on the gift of a new heart.
We’d like to encourage businesses and individuals to open up conversations around organ donation and how this can provide children like Bea the greatest gift of all, life.
To learn more and share information with your loved ones you can visit Chuf’s website here, for further information. https://www.chuf.org.uk/what-we-do-2/organ-donation-2/
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