Morgan’s Story

image004 Morgan has two younger sisters and grew up with them on the family property in Central Victoria.  She attended the local school and like her sisters was involved in many activities such as skiing, ballet and of course riding.  But unlike her sisters Morgan has serious health problems and has undergone many orthopaedic surgeries and many hospitalisations.

Morgan was born with a very rare congenital disorder of glycosylation (CDG).  This affects muscles throughout the body, causing severe physical disability.  It also results in many complex medical problems.  There are only about 700 known cases of the condition world-wide and the associated medical problems are not well understood.  At present there is no cure but research in this area is progressing.

As a result of her condition Morgan has severe ataxia, that is, very little balance, poor condition and low muscle tone with tremors in her hands plus a number of other medical problems.  She is unable to stand or walk independently.  During her teens Morgan spent three years immobilised in a metal brace from her hips to under her chin to try to slow progressive spinal problems.  She was unable to ride during this time but in January 2010 Morgan returned to riding and within the year started competing in FEI Para-Dressage.

image006Morgan’s speech is also severely affected and it is difficult for her to speak and respond quickly.  She often uses a Lightwriter®, a small text-to-speech device similar to that used by Prof Stephen Hawking, to type what she wants to say but because of the tremors in her hands this can take some time and it makes communicating very difficult.  Morgan can speak but it is slow and often difficult to understand.