LAUREN JAINE PHILLIPS
06/08/1995 - 06/10/2007
suffered from multiple health and developmental problems that include the
- She had an as yet undiagnosed condition that was
suspected to be genetic, extremely rare and possibly unique. It was believed
she had a form of Leukodystrophy, a condition that is characterised by a lack
or loss of myelin, the protective fatty substance that surrounds nerve fibres.
This meant that her nervous system couldn't
- Lauren was twelve years old but she still had the
brain of a newborn child.
- She had reached none of the normal stages of development.
She couldn't speak or communicate, sit, roll, support her body weight or have
any control over her limbs.
- She couldn't eat or drink orally, her feeds and
medication passed through a gastrostomy tube directly into her stomach.
- Lauren couldn't use her bladder. A catheter tube was
inserted into her bladder to empty it.
- Lauren often suffered from constipation and required
daily laxatives and stimulation to resolve this.
- Lauren had frequent muscle spasms and showed signs of
irritability that needed to be controlled with drugs.
- Lauren was vision and hearing impaired. She wore glasses
and had been fitted with hearing aids.
- Lauren had developed a curvature of the spine, a severe
kyphoscoliosis, which could not be corrected surgically and did result in
breathing problems. She couldn't cough or clear her airways so she depended on
chest physiotherapy and suctioning to keep her airways clear.
- She was sedated at night to allow her to sleep through
- Lauren has suffered from gastric reflux, her stomach
contents have at times entered her lungs resulting in aspiration pneumonia.
She has had many respiratory infections over the last twelve years. On many
occassions she has been admitted to the Intensive Care Unit at the Royal
Children’s Hospital in Melbourne.
- Lauren would get very unsettled and distressed if left
alone. She enjoyed the company of others and loved being nursed in
some ones arms for comfort and security.
Despite the complications of her fragile
existence, Lauren has endeared herself to all those who have known or cared for
her. To experience one of her irresistible smiles makes all the care and
sacrifices for this special little girl so worthwhile.
A MORE DETAILED DESCRIPTION OF LAUREN'S MEDICAL HISTORY
CAN BE SEEN AT: