Feb 11st 2024 - Bethany’s Story
told by herself My entire life I prepared for a dance career and just entered a prestigious pre-professional program when I was diagnosed with hypertrophic cardiomyopathy at 17. At first, my heart thickness wasn’t concerning; over time, it’s significantly worsened. I’m on my second implanted defibrillator. I no longer dance. It’s tough seeing others […]
Feb 10th 2024 - Paul’s Story
told by Paul I am not a role model! I am: A husband An employee A disabled network leader A good cook and baker Chaotic and untidy Loved by some, despaired of by others, disliked by some A scientist with an Arts degree An Entomologist with published poetry A patient with ultramarathons under my […]
Feb 08th 2024 - Adam’s Story
told by Adam I was born in 1986 at Scunthorpe General Hospital and was diagnosed with Aortic Stenosis at birth. Throughout childhood, I was under the care of Dr Parsons and Dr Evans for all my cardiac appointments. At aged 10, I had a balloon procedure and continued with yearly outpatient appointments at Scunthorpe […]
Feb 07th 2024 - Imogen’s Story
told by Grandmother We found out at the 20 weeks scan that Imogen had hypoplastic left heart syndrome which was devastating. Imogen was born on the 3rd August 2016 and was taken to the Freeman hospital after a couple of hours. She had her first open heart when she was 2 days old which […]
Feb 06th 2024 - Sam’s Story
told by mum Samuel was born at full term after an uneventful pregnancy. We had had a quick discharge from hospital, so our GP visited us at home the following day and a full newborn examination did not reveal anything unusual. Samuel was very quiet, rarely cried and slept beautifully. My only complaint with […]
Feb 05th 2024 - Charlie’s Story
told by Charlie Hi! I’m Charlie and I have Focal Atrial Tachycardia, a defect in my heart’s electrical system causing an irregular heartbeat. Untreated, my heart goes out of rhythm multiple times a day. It’s a very annoying (benign) condition. Having a quirky heart meant I learnt to work with my body. Professionally, I’ve […]
Feb 04th 2024 - Kodi’s Story
told by mum Lynsay At 12 weeks of pregnancy I was told that the baby was very poorly and the fluid around the baby was too much and was pressing down on the baby’s chest and head, the hospital was advising me to terminate the pregnancy as by the time I got to the […]
Feb 03rd 2024 - Mary’s Story
told by mum Elizabeth Before having a child with a hole in the heart, I never imagined the knock-on effects. Who would have thought that it would result in feeding her through a naso-gastric tube or that it might cause extreme reflux and, as a result, it took two people over an hour to […]
Feb 02nd 2024 - Jaxon’s Story
told by his mum Amanda Jaxon is about to turn 7 next month on the 2nd of February, he was born with Ebsteins anomaly, we didn’t know until he was 6 hours old. At 4 days old Jaxon went into multi organ failure and he was given 24 hours to live. We were lucky […]
Feb 01st 2024 - Lilygrace’s Story
told by mum At my 20 week scan, I was told by the sonographer that there was something wrong with my baby’s heart and we had to go back for further scans by cardiology and fetal medicine. They confirmed that my baby has the very rare Heterotaxy syndrome right atrial isomerism (two right atria, […]
