Tuesday, March 5, 2013

Trisomy 5

Trisomy 5 Awareness Day, featuring Gracyn with Trisomy 5P

Gracyn was delivered via emergency caesarean section at 10:50pm on 9th September, 2011 after her heart rate dropped below 50bpm. She was resuscitated after 6 long minutes and flew to NICU in Wellington the following morning for assessment, treatment and observation. She was diagnosed with complete Trisomy 5P, an extremely rare disorder after 1 week in NICU; everyone told us that we might not be taking her home. She has been given a poor prognosis, which we try not to live by – we intend to fill Gracyn’s life with love and happiness at every opportunity.
Gracyn’s disorder means that she has hypotonia (low muscle tone) which exacerbates all of her other difficulties. It is often difficult to explain to people how much energy Gracyn has to expend just to breathe, eat and laugh; something us “well” folk all take for granted.
We do acknowledge that Gracyn’s life is not easy, and it takes lots of intervention to enable her comfort and some independence. She tells us she is happy by smiling and giggling, waving her arms and legs excitedly and by chattering away to us every day. Her personality is infectious even at 18 months old! Gracyn’s favourite things are her pink puppy, eating, smiling, rolling, cuddles and baths. Her father and I feel privileged to have been chosen as her parents – we love her so much.

1 comment:

  1. Thank you for posting this, and for all your amazing work as parents. You are an inspiration!