Rett Syndrome Association of Australia | Emma
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Emma

 

At left: Emma aged 3 years 6 months, 1987Emma at 3 years 6 months

For the past 30 years, our precious ‘Angel’ Emma, has patiently and silently, but not always so quietly, taught her family many valuable life lessons about patience, tolerance, values, and what’s important and definitely what’s not!

She was 5 years old when diagnosed as having Rett syndrome by her neurologist.  This was soon after I was alerted to the condition by her therapist from the Autistic Association who had read an article on the syndrome in a medical journal which seemed to describe Emma. At this time, knowledge of Rett syndrome was just filtering into Australia and most doctors had never heard of it.

Emma’s development was just like so many of our angels –

She didn’t crawl, just bottom shuffled.

She ‘cruised’ around furniture/walls (from 10 months of age) but couldn’t/wouldn’t walk without the    security of something to hold on to. At 17 months, she was finally brave enough to walk alone!

She spoke a few words which disappeared almost as quickly as they came.

Seizures began when she was 3 years old and have never been fully controlled.

Emma attended special school from the age of 4 till 18 years which she didn’t always enjoy.  At least once a week, she would experience a ‘seizure’ just before the taxi cab was due to take her to school resulting in another day at home with mum!

She continues to have a cheeky yet silent manipulating way of acquiring just what she wants when she wants it. Our girl loves being surrounded by her family, which is large – 4 sisters and 1 brother (all younger) providing a constant flow of interesting people to watch, interact with and be entertained by.  After living in supported accommodation for 10 years, Emma came back home to live when she was 28 years old and has been here for the past 2 years. She missed us as much as we missed her and seems to slowly becoming happier than she has been.

Emma no longer walks. She has been confined to a wheelchair following a badly broken leg which drew our attention to her osteoporosis. She also suffers from a number of gastrointestinal issues.

Emma at 30 years

Once a week, Emma attends Riding for the Disabled Sunshine Coast for carriage riding

and participates in a theatre group which perform a thoroughly entertaining production

at the end of the year. She also loves going out to lunch, drives in the car and walks in

the bushland and other natural environments.    

                                                                                  At right: Emma aged 30 years, 2013         

 

Love is all you need…..

Lynette, Emma’s mother
March 2014