Reilly’s Story

A.K.A Reilly Roo, Roo, R, sweet pea, baby blue eyes

Reilly was born on April 11th, 2005. A special day as she also shares her birthday with her granddad.

My husband and I can remember Reilly’s first few months of her life vividly as she was a poor sleeper, extremely irritable and fussy. I can’t count the number of books I read, web-sites consulted, and number of people I contacted looking for answers and not finding anything, often feeling that it must be our parenting skills that are lacking.  I did consult a couple of doctors almost immediately post birth and they said everything was fine, don’t worry. Of course looking back it wasn’t fine and if only we had someone more familiar with developmental disorders could we have mitigated the pain and anguish we all went through in the ensuing couple of years, for both her sake and ours.

Initially though, the only thing we thought was wrong  was that Reilly had some undiagnosed gastro issues for sat up exactly at 6 months and had great eye contact with everyone.  It wasn’t until about 10 months that the red flags started to go up, for Reilly did not babble like the other children, or crawl, and was incredibly chubby. Again we were told not to worry, it was far too early to think that something was wrong.

In the next two years we continued to consult doctors, arrange speech and physiotherapy appointments and connect with any and all available services within the community. In the fall of 2007, we finally were put in touch with a genetics specialist who finally agreed to test Reilly for Rett Syndrome. We waited and waited…. and eventually received the results of the MECp2 genetic testing on March 27, 2008 (Mike’s b-day) that confirmed she had Rett syndrome. Reilly was almost 3 years old at this point and we were not devastated with the news  for we already had come to terms with the diagnosis and were just waiting for the medical community to catch up with what we already knew.

The first three and half years of Reilly’s life was a dark period for my husband and I for many different reasons, mainly because Reilly was in a lot of pain, anguish and torment and no one knew what to do to help. Without getting into all the nitty gritty details we finally saw the light at the end of the tunnel thanks to some specific drug treatements that literally gave us all a new lease on life.  Reilly is now this wonderful little girl who has a wonderful smile and enjoys life to the best of her abilities.

Reilly also has a little sister, London, who is 2 years her junior. I would like to be able to say that London adores her and showers her with affection but that is not exactly the case.  For London often gets irritated when Reilly comes into her space and rarely shows uninitiated signs of affection but I do know that she does care for her in her own way, and is starting to show signs of love and respect.  The challenge is that Reilly does not give her any feedback, verbally or phsyically, so I can only attempt to understand what London must be feeling on her end to have a sister that gets lots of attention without fully understanding the reasons for it. We are trying to get London to develop some good habits, such as acknowledging Reilly when she comes into the room or before she goes to bed. I know it is going to be an art in trying to balance the needs of both girls.

Reilly started to walk on her own at 2 years of age but goes through many periods of unsteadiness and has balance issues.    Unfortunately she has little use of her hands and thus is not able to feed, dress, or bathe herself.  For those that don’t know much about Rett Sydnrome it is considered a severe neurological and developmental disorder.  With that most of the girls are not able to speak or use alternate means of communication.  As a result, we have to read our daughters needs and wants through the gaze of their eyes and screams and shreaks.   Something most people can not even attempt to comprehend.

Reilly (left), London (right)
Ages 5 and 3 at the time

For more information about Rett Syndrome, check out ORSA.


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