And Doncaster parent Charlotte Swan is asking schools, businesses and individuals from the region to wear red for her son Hugo and raise vital funds.
For well over 30 years, CHSF have supported the Leeds Congenital Heart Unit, which treats patients from across Yorkshire, North Lincolnshire and the Humber and is recognised as a “world-class centre of excellence in cardiac care”.
Hugo was diagnosed at ten weeks six days old with multiple heart conditions: Ventricular Septal Defect (a hole in the heart), Hypoplastic Aortic Arch and Coarctation of the Aorta.
He had to undergo six-hour open heart surgery at the Leeds Children’s Hospital’s specialist heart unit in October last year.
Charlotte said: “Hugo was born with a faint heart murmur. Hugo was gaining weight, meeting milestones, and looked a very healthy baby. Due to the heart murmur, Hugo had a routine echocardiogram and was diagnosed at nine weeks old.
“Hugo underwent repair of hypoplastic aortic arch, VSD closure and relief of coarctation (six-hour operation).
“The staff at LGI were absolutely amazing, and Hugo was treated with so much love and care from absolutely every single person on the ward. Likewise, the support myself, and Hugo’s dad received was incredible! Not to forget the support we received from Hugo’s consultant at Doncaster.
“CHSF provided us with accommodation, so that myself, and Hugo’s dad were able to stay close by whilst Hugo recovered in PICU, and HDU. They also provided Hugo with his little bear, medal and certificate for being such a brave little boy.
“Hugo’s operation was a massive success and he should not require any further operations - all being well. We feel lucky that Hugo’s condition was repair work, which should not impact him doing anything throughout his life.
“That said, whilst Hugo was in hospital, I met some incredible people whose journey is not as straightforward as ours has been. The charity provides essential support to children and families in their hardest times. We will always continue to show our appreciation to LGI. They gave our baby his life, and for that we will be forever grateful.”
She added: “Without the support from CHSF, we wouldn’t have been able to stay with our baby. So, please support Wear Red Day. CHSF are such a fantastic charity, and make life that little bit easier for other families during difficult, stressful and worrying times for them.”
An average of 13 babies each day in the UK are diagnosed with a heart defect – with more diagnoses later in life. Congenital heart disease is the most common birth defect in the UK, affecting around one in every 100 babies that are born.
CHSF have given many millions of pounds to the Leeds Congenital Heart Unit thanks to public support since it was devised in 1988. The money goes towards life-saving equipment, much-needed parent accommodation, essential ward facilities, medical research and direct family support.
The annual Wear Red Day event has brought in over £330,000.
Supporters can register for the event at http://chsf.org.uk/wear-red-day and will receive a free online pack which contains ideas and tips for fundraising.
For text donations please text CHSFWRD (plus any £amount up to 20) to 70085.