All About Connie

Connie was born on the 6th November 2008 and has always been a healthy, intelligent, witty, fun loving girl.  She loved pink, all things sparkly, the trampoline, painting, chocolate and macaroni cheese.  Her best friends were Emma and Catriona, who she thought the world of.  Her favourite film was, ‘Frozen’, which we had to watch several times a week.

Connie had always been very self-assured, she knew her own mind and was a determined and confident little girl.  She was a very proud big sister and a brilliant helper when her brother was younger.

However not long after her fifth birthday and around the time she started school we noticed changes in her behaviour and concentration levels.  She became clumsy and was no longer interested in reading and writing, which had always been a massive source of enjoyment, pride and achievement for her in the past.

We became increasingly concerned and in June 2014 Connie underwent medical tests.  It was after these tests we were given the devastating news that Connie had Metachromatic Leukodystrophy (MLD), a genetic condition for which there is no cure.

In just a few short months Connie lost the ability to walk and talk.  Connie is now completely dependent and can no longer sit up unaided, she is fed via a feeding tube and has begun to lose her vision.

As yet this disease has not stolen Connie’s amazing sense of humour and she continues to light up our lives with her infectious giggle.

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