Scarlett’s story
Born seemingly healthy, Scarlett was the 'perfect'
baby. At about 6 weeks of age, she slowly stopped
the 'frog position' on our chest, and her legs began to become increasingly floppy. At three months to the day, a peadiatrician provided a preliminary diagnosis of SMA, which was confirmed the next day following further tests while in hosital. The next step was referral to Palliative Care. While we were then about to face the most heartbreaking experience of our lives to date, our nursing, medical and allied health team were (and remain) fantastic!
Scarlett was quite stable for a few months, her main symptoms being lack of movement in her legs and arms. At around 5 1/2 months she began to lose her ability to swallow and breastfeed. She commenced supported feeding, and shortly after, oxygen therapy. Scarlett did not lose her ability to smile, chat and laugh with her face and eyes. Her face and smile would light any room, and she captured many hearts.
Scarlett's Adventures
Her family ensured that her life was full of rich
experiences, and she had many (home-based) 'adventures' with her sister, family and friends. By creating adventures we were able to better manage a way of 'living with dying', so to speak. By actively creating these experiences we were able to share much more with her, rather than wait until they just happened. The adventures, which are essentially about having everyday experiences, desired life experiences, and fun times, helped to ensure days were richer for the experience of Scarlett. They also helped to ensure our memories were not just about the routine of care, or a series of 'groundhog days', focussed on her illness and deterioration.
We recorded our Adventures in a book called 'Scarlett's Adventures'© and a Powerpoint presentation called 'The Adventures of Scarlett Rose Taylor'©. Our records are memories that are not focussed on her illness, and while we have missed out on a lifetime with her, there are firsts that mean we don't need to say - 'we never had a chance to do that with Scarlett'.
Through her short, but happy and eventful life, Scarlett was cared for entirely at home, with the support of the Palliative Care Unit of the Women’s and Children’s Hospital, Novita, and her pediatrician, Dr Phil Egan. But even with such great care, there were few avenues of SMA specific funding in South Australia. The rarity of the disease also meant there was little information, equipment or resources to assist with the management of children with SMA, hence the establishment of the Fund, specifically for children with SMA or other neurological or genetic disease who are patients of the WCH. Our Fund is a recognised as a Community Supporter of the South Australian Women's and Children's Hospital Foundation.
Creating memories
Our concept of actively creating adventures and memories from routine was inspired by a saying by the Itailian philosopher Carlo Pavese (1908 - 1950), who said:
'we do not remember days, we remember
moments...the richness of life lies in
memories we have forgotten...' (C. Pavese)
Scarletts Adventures prompts us to remember those moments so we don't ever forget!
Adventure Kits
Scarlett is the inspiration behind Adventure KIts for Sick kidS (AKISS), which aims to assist families in a similar position to create and record adventures and daily experiences, and therefore have memories that are about fun, play and life in general. Look out for www.adventurekitsforsickkids.com.au coming soon!
Our story about creating Adventures and memories
has inspired other families experiencing SMA or other conditions. The concept has been actively embraced by the national SMA Association, SMA Australia.
Scarlett's story, and a description of just some of her Adventures (and our memories!), can be found on their website.