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Nautical Nurses
Meet our metabolic medicine patients
Herdip and Elin work in the metabolic medicine department at Great Ormond Street Hospital.
This unit deals with patients suffering from 1,000 life-threatening metabolic disorders including cystic fibrosis and Gaucher disease.
Henry Jameson
Perky four-year-old Henry Jameson was diagnosed with Gaucher disease in September 2005, and needed to visit GOSH regularly for appointments and procedures, including infusions of enzyme replacement therapy or ‘Batman juice’ as Henry's mum Lucy called it.
“Although this was a daunting few months, Herdip and the team worked extremely hard to ensure that Henry was confident and happy, making the whole procedure and time spent on Dickens Ward very positive, rather than the scary experience so regularly associated with hospitals," said Lucy. "And the continuity of care has been fantastic.”
For more information on Gaucher disease, visit www.gaucher.org.uk
Oliver Flowers
Oliver is three-years-old and has MPS1, formerly known as Hurler’s Syndrome, a rare inherited condition. He needed a Bone Marrow Transplant, which has been successful.
MPS children used to die from respiratory and neurological complications. Their bodies cannot get rid of certain chemicals. Their lives have been transformed by Enzyme Replacement Therapy (ERT), a treatment pioneered at GOSH, which addresses many of their problems and even makes them look more healthy. ERT meant that Oliver was stronger for his transplant and this may have made a significant difference to his progress through this gruelling procedure.
Oliver has been cured by the Bone Marrow Transplant, and now no longer needs the enzyme treatment, but he is still being treated for gastric problems.
For more information on MPS, visit www.mpssociety.co.uk
Click here to make a donation towards our nautical nurses' £1 million target*.
* Our primary focus is to raise £250,000 for Metabolic Research to help improve the lives of patients with life-threatening metabolic disorders such as Cystic Fibrosis and Gaucher disease. Following this, £500,000 towards the ongoing hospital redevelopment and the balance £250,000 will go towards services associated with Metabolic Medicine.