“I realised there is a whole community of heart warriors and incredibly strong parents who truly understand this journey.
“There will be hard days. There will be moments of fear and exhaustion. But there will also be strength you never knew you had, love that carries you through and people who step in to support you when you need it most.”
Mum Shakeelah said:
“When I found out about my son’s diagnosis antenatally, I really struggled to come to terms with it. I had never heard of congenital heart disease (CHD) before. During my appointments, I never saw any other families going through the same thing, which made me feel like this must be very rare. I felt alone.
“As a diabetic, I blamed myself. I kept thinking this was my fault and that I had somehow caused my baby’s heart condition. I didn’t know any other families affected by CHD, so I had no one to relate to or share my fears with.
“I was in close contact with CCNS Marie Wray, who answered all my questions and was incredibly supportive during such an overwhelming time. When I was waiting for a NICU bed to become available, I met another family whose child also had CHD. For the first time, I felt like I had someone who truly understood my anxieties and fears.
“After delivering my son, he was taken straight to NICU. When he was later transferred to HDU, someone from CHSF left a bag of essentials for me, even though I wasn’t present at the time. That small act of kindness meant so much.
“I also met Sarah (Head of Family Support) on several occasions. From the moment we spoke, I felt like I had known her for years. She immediately put me at ease and supported me through such a difficult period. Having that emotional support made an incredible difference to our journey.
“CHSF supported us financially during an incredibly stressful time. They provided money for fuel and Tesco vouchers, which made a huge difference when we were travelling back and forth to the hospital and managing everyday costs alongside everything else.
“There were moments when I felt completely emotionally drained and overwhelmed. At one point, I had run out of basic toiletries. I reached out to Sarah, and she brought some in for me and discreetly handed them over. That small, thoughtful gesture meant more than I can explain. It wasn’t just practical support – it made me feel cared for, understood, and not alone.
“I think people should support Wear Red Day to raise awareness of how many babies are affected by congenital heart disease every single day. Before my son’s diagnosis, I had never even heard of CHD. The more awareness there is, the more families will understand that they are not alone.
“Greater awareness also helps ensure that our children are treated equally and with understanding. Children with CHD should not be labelled or defined by their condition. They are strong, brave heart warriors who deserve the same opportunities, compassion, and inclusion as any other child.
“By supporting Wear Red Day, people are not just wearing a colour – they are standing with families like ours, helping to spread knowledge, reduce stigma, and show that every heart matters.
“To other CHD families – you are not alone, even when it feels like you are.
“I realised there is a whole community of heart warriors and incredibly strong parents who truly understand this journey. There will be hard days. There will be moments of fear and exhaustion. But there will also be strength you never knew you had, love that carries you through and people who step in to support you when you need it most.
“Be gentle with yourself. Ask questions. Reach out for help. Accept support when it’s offered. You are doing the very best you can for your child.
“Our children are stronger than we ever imagined – and so are we. Sending love and strength to every heart warrior and their family.”
Wear red in Feb for the thousands of children in our region like Abdul Mu’eed!
Sign up to take part in Wear Red Day this February to raise vital awareness of congenital heart disease, and life-saving funds for CHSF!
Donate online to our Wear Red Day 2026 JustGiving page
Donate by text: Text CHSFWRD (plus any amount up to 20) to 70085
(e.g. To give £5 text: CHSFWRD 5 to 70085)
Spread the word: Tell your friends, family, school or business all about our campaign – and how easy it is to sign up! Thank you.
Blake
Blake's mum, Chelsea, said: “My partner Matthew and I found out that Blake had something wrong with his heart when he suddenly was really poorly on 30th September 2022. “We took him to Chesterfield Hospital to be seen and Matthew and I were told he had sepsis,...
Albie’s story
written by mum, Abigail"This is Albie. He is 6 and a half months old. At his 8 week check up, they discovered that he had a heart murmur. "After being referred to Leeds General Infirmary at four months old, we learnt that Albie had Tetralogy of Fallot and will need...
Bonnie
Bonnie is two years old and was born with Atrial septal defect (ASD) and Ventricular septal defect (VSD) which were surgically repaired in Leeds at age 4 months. She has just celebrated her second heart day on 4th May! Mum Charleigh tells us about Bonnie's CHD journey...