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Our Families
- Fundraising Target:
- $ 20,000.00
- Donations to Date:
- $ 12,227.00
Messages of Support
Team Scarlett
Description
Our desire for Scarlett is to see her continue to thrive physically, mentally and emotionally. We want to remove as many physical barriers as possible to enable her to be included in every part of our family life, both at home and in our community. To reach this goal we need to ensure Scarlett has access to all the equipment she requires, both now and in the years to come.
Hi, we are the Purcell family! Scarlett was born in 2007 and is the sister of Trinity (born in 2004).
Our main aim for this year is to raise funds to contribute towards the purchase of a Wheelchair Accessible Vehicle to enable Scarlett to be transported more easily and comfortably and allow her as much access to the community as possible. The other needs are for a wheelchair and for respite.
You can also follow us on Facebook by copying this link into your browser: www.facebook.com/scarlettpurcellsupportgroup.
Scarlett’s Story
Scarlett was born in August 2007. She was diagnosed with the incredibly rare condition, Chromosome 13 Ring Syndrome which presents differently in every affected individual. Scarlett was born 5 weeks early, weighing only 1.5 kilos and spent her first 7 weeks in the special care nursery at Monash Hospital in Victoria.
Scarlett has many abnormalities which you can read later in this article, however, when we look at Scarlett we do not see any of these things! We see our beautiful daughter (and sister for Trinity) who has achieved so much despite her condition and we know she will continue to amaze us as we share her journey.
Scarlett has already achieved more than was originally deemed possible for her and we know she still has so much more that she can do and learn. She has learnt to roll from her back to her stomach (but is still trying to work out how to get back onto her back)! Scarlett also loves to stand in her standing frame.
Scarlett is a generally happy and peaceful little girl with a cheeky personality. She laughs and babbles and loves physical touch - her favourite things would definitely include having her hair played with and her feet & back rubbed!
Scarlett’s Challenges
Scarlett suffers with profound deafness and limited vision in her right eye (her left eye was non-functioning and was eventually removed in 2009). Scarlett was also born without a functioning suck reflex and was fed via an orogastric tube until 4 months of age, at which time she underwent a medical procedure to insert a PEG feeding tube.
Scarlett was unable to maintain her own oxygen saturation levels (SATs) and was reliant on oxygen therapy 24 hours a day. This remained necessary for Scarlett until early 2011, when it was determined that she had improved sufficiently to be able to be on “air” only during the day (she continues to require oxygen at night for the time being). This was a significant milestone for Scarlett and our family and we joyfully celebrated her achievement!
Scarlett also suffers from a serious brain malformation, with a substantial part of her Corpus Callosum (the bridge in the brain that joins the left and right hemispheres) missing. This has resulted in severe physical& intellectual delays (she is unable to sit or stand unaided). Scarlett has also developed Epilepsy and has suffered a number of serious seizures.
How you can help
Any support you are able to offer is very much appreciated.
• Donate online
• Send Scarlett’s web page to your family and friends
• Help us raise sponsorship for Team Scarlett at the Annual Riverwalk event. You can read about the event at http://www.developingfoundation.org.au/help-give-raise-funds/riverwalk and we’ll update you through Scarlett’s Support Group Facebook page.
All donations of $2 or more are tax deductible and you will not receive any additional credit card charges. The Developing Foundation Inc. commits 90% of our target directly to Scarlett’s expenses. The balance is used by the charity to cover administration expenses.
For more information on helping or if you have a question for Team Scarlett please email purcellfamily1236@bigpond.com or phone Sara on 0431910631.
Thank you for your assistance.
Nick and Sara Purcell
