Alayne Drowley was born on the 17th of May 1999; a healthy, happy, normal baby. However, around the time of her second birthday she endured her first encounter with the medical world. Alayne battled Salmonella Septicaemia undiagnosed in Bega hospital for a week. Although she recovered medically following this ordeal, once we returned home she stopped talking and began to withdraw socially. After months of follow ups with her paediatrician who labelled this as trauma she was later diagnosed with “Persuasive Developmental Disorder Not Otherwise Specified.” It had become clear that Alayne had suffered lifelong damage and was later diagnosed with “Atypical Autism”. Over following years our entire family became actively involved as therapists with Alayne through an ABA (Applied Behavioural Analysis) program and PECS (Picture Exchange Communication System). Our hard work eventually paid off, granting Alayne with a form of communication and a quality of life she would not otherwise have had. She remained a healthy and happy child. In June 2010 Alayne became unwell for the first time since she was two. After endless visits to the Bega Hospital emergency department and often lengthy hospital admissions we continued to be told by health professionals that she was simply being a ‘naughty special needs child’ and that her symptoms, which often left her in agony and tears for days on end, were simply ‘behavioural’. Alayne later spent from October 2010 to February 2011 in Westmead Children’s hospital where she continually vomited and lost almost 20kg. By December 2010 Alayne had become so unwell and malnourished that her first surgery occurred; a Laparotomy to repair issues with her duodenum & intestines. Alayne continued to be hospitalised for - 61 admissions between 2011 & April 2017. . Some admissions were for weeks, others months, the longest was 411 days. During her last admission in Paediatrics when she was septic again Doctors finally performed a colonoscopy that showed her bowel was necrotic, collapsed & was adhered to her organs. What followed was a 12 hour surgery to remove her large bowel & 3 months recovery in hospital. Alayne then transferred to adult care at RPA in Sydney in the Intestinal Failure Ward / Clinic. Finally she has the best care & support for her medical needs. Alayne's condition means she cannot absorb any nutrition or fluids via her stomach or intestines. She simply cannot be kept alive without Home Parental Nutrition which is administered via a central line in her chest to her heart / blood system. Parental nutrition is run for at least 16 hours every day, along with fluids and medications .All Alayne's nutrition, fluids and medications are intravenous. Anything we offer her orally is for fun, taste, socialisation and is drained from her stomach so that she does not become unwell. As well as SBS- Intestinal Failure, Alayne suffers from Epilepsy, Autonomic Dysfunction, Acute/chronic Pancreatitis, scoliosis, bilateral Plano valgus feet which are deteriorating. Through all that Alayne has been through & continues to live with she is the most beautiful soul that you will ever meet. Her smile will melt you. She works daily with her family & disability support workers to keep motility and has learnt to communicate using Alternative Access PODD. She is witty, clever, social, caring. She loves art, cooking, music, the beach, animals, reading and shopping. Thank you for your love, care and support,
The Drowley Family.
