In 2004 Naomi was first seen at the Royal National Orthopaedic Hospital (RNOH) in Stanmore as she had a mild curve in her spine. Since then the genetic diagnosis of Marfans Syndrome has been confirmed, and a few weeks ago the surgeon advised us that her scoliosis had now reached the point where surgery is necessary. As Naomi is still growing this needs to be done using Growth Rods, with further operations every 6 months for the next 5/6 years or so to extend them as she grows. Naomi’s heart valves and aorta are also affected as a result of her Marfans, and she takes Beta Blockers twice a day.
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