Follow Alayne's story at: https://www.facebook.com/angels4alayne/
This campaign is intended to provide financial support to Alayne and her immediate family as carers, in order to maintain her health and quality of life. For 16 years Alayne's care needs have been met and solely provided for by her family. However, her recent deteriorations have left both Alayne and her family exhausted, both emotionally and financially.
Alayne suffers multiple complex medical conditions. Her most debilitating condition being total intestinal failure. This is part of broader degenerative condition that is, at present, undiagnosed.
The labels she has been diagnosed with over the years include: 'Pervasive Developmental Disorder Not Otherwise Specified', 'Chronic Pancreatitis', 'Chronic Pain Syndrome', 'Motility Disorder', 'Hypoxic brain injury', 'Neuromuscular Degenerative Disease', and suspected 'Mitochondrial Disease'; even so far as to be labelled in the past as 'a naughty special needs child' and that her issues are merely 'behavioural'.
￼In recent years Alayne's physical health has proven that none of these labels or diagnosises encapsulate the complexities of her daily living, nor the financial burden to maintain her quality of life.
Alayne has spent 880 days with severe illness in various hospital settings since June 2010. With each long night facing Alayne's parents an ongoing waiting game...
Alayne's daily care needs are a full time job in themselves, which are provided solely by her immediate family. She is non-verbal and will remain dependent on care for the remainder of her life. Daily her nutritional needs are provided intravenously through Total Parenteral Nutrition (TPN), a solution that is infused directly into a central line to Alayne's heart. This means for 24 hours a day, Alayne is hooked up to various pumps and machines. This, along with her stoma bags (gastrostomy and illeostomy) make up her daily living, something inconceivable to most.
In writing this, today marks 12 weeks in battling her most recent deterioration. On Good Friday 2017, Alayne suffered a severe seizure episode from septic shock. She was intubated and transferred to Westmead Children's Hospital. After weeks of treatment in ICU, a colonoscopy revealed diversions colitis and ischaemic colon (dead bowel).
On the 11th of May, Alayne underwent the biggest surgery of her nine major operations so far. A 10.5 hour surgery to remove the entire colon.
Following surgery, she had several post-surgery complications, including intra-abdominal sepsis and free fluid throughout her entire abdomen and collapsed lungs.
As always Alayne fought for her life and beat the odds, returning home on the 23rd of June, 2017. Unfortunately Alayne was readmitted to ICU in a local regional hospital only two days later, where she awaits transition to her first adult tertiary hospital, a complex and financially draining excercise given Alayne's complex care needs and the limitations on a strained health system.
Alayne's tertiary hospital for adult care is 7 hours away from her home. Because of Alayne's dependent care and vulnerability, a family member is always attending her care. Financially, this is an inconceivable burden given limitations for carer accomodation within the adult health system. In the past 10 weeks this has cost Alayne and her family $8000 alone. Not to mention loss of wages, travel and exhaustion of leave entitlements to one of Alayne's parents, who is forced to work 4.5 hours away from home to provide for her needs. This will increase when her primary care is transitioned to a hospital located within greater Sydney city. On top of this her basic health needs from medications, to medical consumables are paid for by her family placing further financial strain, particularly in times of medical emergencies.
As older brother of Alayne and seeing the exhaustion play a toll on my family both emotionally and financially for over 16 years, I felt it was time to do something. Those who know me will understand that creating something like this means a lot. Neither myself, nor my family, are ever ones to actively seek help, attention or handouts. But after 16 years of providing for Alayne solely within our family. Times are dire. Join with me, and help keep a young girl smiling.
At Angels for Alayne, know that every dollar donated goes towards maintaining the life of a young girl who has fought against all odds, and overcome inconceivable hardships. All donations will be delivered to a trust account devoted to the ongoing longevity of Alayne's care and needs.
Contribute and share to help us keep a young girl smiling...
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