Rosey's story

11 Sep 2018, 1:04 p.m.

Patient Rosey

Rosey, 5 from London has been treated at Great Ormond Street Hospital (GOSH) since she was a baby. Rosey has a condition known as VACTERL association which is a name to describe a condition which presents a number of associated symptoms. This affects lots of her body including her heart, bowel, bladder, oesophagus, larynx and spine and she has had to have 20 operations and procedures in her short life time.

Coming to GOSH 

Rosey’s mum Rachel was not aware of Rosey’s condition until after she was born when Rosey’s midwife spotted an abnormality on the lower part of Rosey’s body which would affect her stomach and bowel. At just one day old Rosey had surgery to insert an emergency colostomy bag so that she was able to pass waste. She then spent ten weeks recovering in the special care baby unit where doctors could monitor her progress.

During this time doctors discovered other complications that would affect Rosey’s heart, bowel, and spine. Rosey was soon transferred to GOSH for genetic testing to help find a diagnosis for her condition. Doctors eventually diagnosed Rosey with VACTERL association, a very rare condition.

At just six months old Rosey had surgery to repair a whole in her heart caused by condition. Since then Rosey has had lots of surgeries on her bowel, bladder, and oesophagus to help her feel more comfortable.

Patient Rosey and family

Being part of the programme 

Rosey is a familiar face on the surgical wards bringing a smile to all the staff who take care of her. Rosey and her family enjoyed taking part in Paul O’Grady’s Little Heroes. Rosey’s mum Rachel said “we’re so proud of Rosey and we love seeing her on TV”

The staff who looked after Rosey

Little heroes

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GOSH celebrates Rare Disease Day 2026 with local community

GOSH specialises in rare disease research and to celebrate, we recently invited two local North London Year 4 classes to join us for the day to learn about how we care for patients with rare diseases.

Professor Francesco Muntoni wins prestigious research prize

Professor Francesco Muntoni, GOSH Paediatric Neurology Consultant, has been awarded the 2026 Novo Nordisk Prize in recognition of his pioneering work transforming the outlook for children with Duchenne muscular dystrophy (DMD).

GOSH secures £1.4m in NIHR capital equipment funding to boost research capability

This investment will significantly strengthen our research infrastructure and enhance our ability to deliver world‑leading paediatric research across the whole hospital.