Georgia's Story

Georgia Lily Lucas
was born at home on October 6th 2008.  She appeared healthy and perfect.  Her two older sisters Calla and Maya were thrilled to meet their baby sister.  Georgia developed her first chest cold at just two months of age but other than that still appeared completely healthy.  Around the age of 3 months her mother started to notice that Georgia didn’t seem to be as strong as her peers.  By 4 months her parents were starting to become concerned by the overall ‘weakness’ their daughter seemed to be showing and made an appointment with the doctor.  Genetic tests were ordered but based on the fact that there was no previous history of any diseases on either side of the family there was no rush. 

On March 16th of 2009 Georgia was taken into the hospital with pneumonia and bronchiolitis.  She was placed on antibiotics and a bi-pap machine to help with her breathing.  As the pneumonia cleared up it became clear that Georgia was very weak.  She could no longer move her legs very well and even lifting her arms seemed challenging.  She was never really able to hold up her head.  On April 1st, after rushing some testing she was diagnosed with Spinal Muscular Atrophy Type I*.  There is no cure and no treatment for this disease so Georgia’s parents chose to take her home under palliative care. There she lived her final precious weeks surrounded by the love of family and friends. She died in her mother's arms on the 21st of April.

Since Georgia’s death her parents have made a conscious effort to try to raise money for and awareness about the disease that took their youngest child.  Part of that effort includes a fall fundraiser where all proceeds will be donated to Families of Spinal Muscular Atrophy Canada.  The fundraiser is now a 5K run/walk held in late September or early October (near Georgia's birthday).

* Type I is considered to be the most severe form of the disease and is also referred to Werdnig-Hoffman disease.  Average life expectancy is 8 months.  Georgia lived just over 6 months.
SMA Information
  • SMA is the cause of more deaths in young children than any other genetic disorder
  • SMA is degenerative and terminal, affecting the ability to walk, crawl, sit, eat, breathe and swallow
  • The mind is unaffected and children with SMA are bright, social and eager to play despite their failing bodies
  • Between 1 in 35 and 1 in 40 people unknowingly carry the SMA gene.  The majority have no known family history
  • SMA is a pan-ethnic disease and does not discriminate based on race ethnicity or gender
  • There is currently no treatment and no cure for SMA
  • The National Institute of Health selected SMA as the disease CLOSEST to a TREATMENT and researchers state a cure could be reached in LESS than 5 years – If given the resources
  • SMA research has already benefited research in ALS, Alzheimer’s Parkinson’s, Tay Sachs, and many other diseases