Heart warrior Rose was born with a very complex, terminal heart defect – Interrupted Aortic Arch. A defect that only 1 in 50,000 babies are born with.
Even before Rose was born, her family were fundraising for CHSF. #TeamRose have completed their latest fundraising feat for our charity – making their way virtually from Land’s End to John O’Groats – and they’ve raised an incredible amount in the process…
Rose posing for her #ScarSelfie in 2020
Rose’s mum, Katie, tells us about their family’s CHD journey so far – as well as their virtual journey through the length of the UK!
The cardiac unit at Leeds General Infirmary diagnosed Rose’s heart defect at 20 weeks gestation; they followed up at 28 weeks and 35 weeks with fetal echocardiogram. When Rose was born she was taken straight to the Neonatal unit and then transferred to the cardiac ward. Without this care she would have died.
When Rose was just 3 days old, she had open heart surgery lasting over 10 hours. She was in hospital for 5 weeks and then had fortnightly appointments to monitor her progress. At 9 months old she had her second round of heart surgery after which she had a stroke.
Rose had significant brain damage to both hemispheres and was left paralysed on her left side. Rose will face more surgery when she is 4 or 5 years old and will need recurring care for the rest of her life.
I have vivid memories of being in PICU with Rose and seeing Children’s Heart Surgery Fund stickers on various items throughout the ward. Ever since then I vowed to raise money for CHSF so that we can all continue to support the fantastic work they do.
Rose has a very complex heart defect and will require further investigations as she grows older. Much of the technology they use to investigate (like the new Cath Lab Hybrid Theatre) has been made possible because of fundraising by CHSF and their supporters.
After Rose’s second surgery, one of the Cardiologists mentioned that they might use the 3D printer to create a model of Rose’s heart prior to deciding which surgery to complete.
This kind of progress is incredible and will help so many individuals.
L to R: Mum Katie, Rose, Mum Sue, Brother Will
A 3D Heart Printer was funded by CHSF donations
Uncle, Ben, and grandfather, Tony with heart warrior Rose
Rain or shine, Katie completed her miles for Rose
When I was pregnant with Rose in February 2019, the school I work in held Wear Red Day. The pre-school (where our son Will attends) raised money by doing a sponsored scooter competition. Last year during lockdown my friend, Anna, and I raised £1,328 by running the Virtual 10K.
Then during the second lockdown my dad said he wanted to do a fundraiser. He was keen to raise money to help families like ours. Dad wanted to cycle a significant distance.
My brother, Ben, and I agreed to join up with him; Ben was walking, I was running and Dad was cycling the virtual distance from Land’s End to John O’Groats (1083 miles)!
Will, who is 6, also decided to get involved and ran 1km in our back garden during the final week. It was a real family event. It took us from February to May, completing the distance just in time for Rose’s 2nd birthday. To date we have raised £2279!
It is a great idea to get other people on board with your fundraising. Running with my friend Anna not only helped me speed up my 10K time but it also meant that it opened up fundraising options – her colleagues, her family and other friends.
The same thing happened when Dad and my brother joined forces this year. Dad’s golfing and cycling buddies were happy to donate because he was completing the majority of the distance for us.
My advice would be to send pictures to as many people as possible. We sent emails to as many people as we could – friends, family and colleagues. We also posted it on social media sites and sent WhatsApp messages.
When we had finished the distance, we still needed to raise another £600 so I created a video compilation of us with pictures and a couple of videos. This really did the trick – I think people like to see videos and pictures so they can feel a part of the journey.
An incredible fundraising effort from the amazing #TeamRose. Thank you for all that you do as a family for Children’s Heart Surgery Fund.
Well done, thank you and a very Happy Birthday to wonderful Rose from us all at CHSF! #BecauseOfYou
Rose’s grandfather Tony got on his bike for CHSF!
Smiles for finally crossing the finishing line!
Could you step up to the challenge and start fundraising for CHSF? We’ve got lots 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 email firstname.lastname@example.org or call 0113 831 4810
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