Hayden and Sarah Noble Journey with Mucolipidosis III

Hayden and Sarah’s story beings the day Hayden was diagnosed with Mucolipidosis III in 1987 and a few short months later Sarah was diagnosed in January 1988. This terrible disorder has affected the children in every way imaginable. They have had many surgeries to try and manage the condition. Hayden was significantly delayed in his learning which meant that he ended up doing his schooling through special education. Sarah because she was so young when diagnosed had better outcomes through early intervention.

In 1999 they entered into a clinical trial using Pamidronate to try and arrest their severe bone disease. This treatment had outstanding success which saw the results presented at an International Lysosomal scientific conference in 2000 in Paris. This treatment has helped many ML families around the world.

You can read Hayden and Sarah’s story in full here at the LDNZ website.