Hi. This is our gorgeous daughter Lauren-Mary Hayden. Lauren is just gone three years old. She lives with a very rare genetic disorder known as 1P-36 deletion syndrome. 1P-36 deletion syndrome is characterised typically by delayed physical and mental development. Typically this is most apparent in areas such as growth, limited speech ability, low muscle tone, hypotonia, seizures, heart problems and distinct facial features. In general delayed development occurs. In many cases children suffering from this disorder will eventually gain some of the abilities of other children depending on the severity of the genetic breakage. However some children may never reach these milestones.
With Lauren the main areas of concern are sight, inability to hold her self upright, and speech. When Lauren was a few months old, seizures were a major concern, however these are now controlled by medication. As a consequence of the condition, Lauren has been diagnosed with a heart condition known as pulmonary stenosis. Thankfully this is not a major concern for Lauren at present.
The purpose of this blog is to tell Lauren’s story and raise general awareness of 1P-36 deletion syndrome. See the links section for some more info on this condition.