Emily. Teenager Before Her Time

Emily was born exactly on time, in the most normal of condition, and was perfect in every way.  The first week of Emily's life was marked with a seemingly happy baby.  However, by the second week, Emily was unsettled and crying, nothing unusual for a new born, but then she started growing at exceptional rates.  In her 4th week of life, Emily grew 4 cm in a week.  Little did we know, or her physicians, that Emily had underlying conditions that are rarely seen.  By 4 moths of age, Emily was the size of a 1 year old, and her growth continued as did her constant health issues. Bouts of sickness, and infections that Dr's put down to being in daycare as both her Dad and I work.  Each time her growth was measured it was always way above the 99th percentile, and often 99th percentile for a couple of years above her age.  By 2 years of age, Emily had breast buds and body odour, and a rash on her skin since birth that was now being diagnosed as cystic acne. At 2 years of age.  Finally we were referred to the Peadatric Acute Care Unit at Wyong Hospital, where tests were run and Emilys hormone levels came back as though she was a pregnant woman.  Emily was then 3 years of age; she had breast buds, strega on her legs, excess body hair, and acne.  Something was very wrong with our little girl.  Eventually, they did a long run of tests that involved our daughter needing to be sedated, because now, blood draws and the process was causing her little body so much stress that she was prone to go in to Adrenal Crisis which is life threatening.  At the end of the tests, Emilys conditions were so complex, that they could not give a definite answer as her conditions were beyond their expertise as they put it.  But our daughters body was aging faster than other peoples with her bone age, nearly 4 years above her chronological age.  Emilys body since birth was growing at such a rate that she was in constant pain from the growth alone.  Emily has reduced mobility due to her conditions and is required to have weekly physio and OT.   Emily has Addisons disease, congential Adrenal Hyperplasia, Central Precocious Puberty, Autism Spectrum Disorder, Sensory Processing disorder and Anxiety Disorder.  Currently at 5 years old, Emily is the 99th percentile for 8 year olds, has already started menstruating. She is due to start her treatment of hormone replacement therapy that is a 3 monthly injection.  It is $1455 per shot, and will throw her into menopause, with all the side effects that 50+ year old women have, and as we are both working, we are not entitled to health care /pension card rebates.  So this treatment, along with her other many appointments and therapies, are covered by us solely.  We work fulltime each and each time Emily is sick, it is days off, mostly without pay, as we have exhausted all of our leave entitlements.  We dont have family support to help take Emily, but are blessed with some close friends who help Emily, but through this we are mostly alone. What we are hoping is to raise some much needed money to get Emily more treatments and to cover the costs of her on going medical care.  Currently Emily is under 4 Professors of Endocrinology, between Westmead Childrens Hospital, The Sans Clinic and John Hunter Childrens Hospital and under a team of 8 genetictists at Royal North Shore Hospital.   We are at a loss financially.  We simply dont have the funds to provide everything that Emily needs treatment wise.  It is hard to ask for the for the charity of strangers for your child, but, here we are, hoping that you can help make a difference in our little girls life, so she can just feel like a normal 5 year old.  Not the 5 year old that is battling puberty amongst other condtions.

Organizer

Tam Dover 
Organizer
Bucketty NSW

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