One-year-old Rocco was diagnosed with a heart condition, Transposition of the Great Arteries, before he was born. The two main blood vessels leaving Rocco’s heart, the pulmonary artery and the aorta, had swapped over and he would need to undergo surgery to repair the problem at Great Ormond Street Hospital (GOSH) (http://www.gosh.nhs.uk/) very soon after being born. Mum Lisa tells us more, as well as why the family, including a 12-week-old Rocco, took part in last year’s RBC Race for the Kids.
Louis is a 19 year old, ex-Great Ormond Street Hospital (GOSH) (http://www.gosh.nhs.uk/) patient who has Hunter’s Syndrome, a rare degenerative condition which is caused by a missing enzyme. To mark Rare Disease Day, Louis explains about his rare condition and how it isn’t stopping him living a full and exciting life.
Five-year-old Mela was diagnosed with Aperts Syndrome, a rare craniofacial condition, soon after she was born and has undergone a number of operations at Great Ormond Street Hospital (GOSH). This year, Mela is gearing up for our 5k family fun run, RBC Race for the Kids, on Sunday 7 June. Want to join her? You can! Sign up today. Here’s Mela’s story.
Ezara-Mai is 10-years-old and has a rare condition called juvenile dermatomyositis (JDM), which affects the muscles and the skin. Today, on Rare Disease Day, Ezara-Mai’s mum Lorna shares their story and tell us what it’s like to come to Great Ormond Street Hospital (GOSH) for treatment.
Pop into Great Ormond Street Hospital (GOSH) and you’re bound to spot the yellow T-shirts worn by our volunteers. Whether they’re greeting families in reception, giving people directions or playing with children in the hospital’s restaurant, volunteers play a huge role at GOSH. Here, we meet one of our smallest and furriest volunteers, who spends time with children on the wards.
Earlier this month the redevelopment team held an event to gather feedback on plans for the hospital’s new Centre for Research into Rare Diseases in Children. Still at the planning stage, the new building will enable scientists and doctors to work together on the discovery of new and better treatments for children and young people with rare diseases.
Over 20 staff and parents gathered to assess how the plans will meet the needs of patients, families and carers. But what did they think?