NSW CHAMPION

20220915_163931 (1)_edited.jpg

Kerrie Zorgdrager (she/her)

LIVED EXPERIENCE
Disability and Rare Disease

KEY INFORMATION

Place of Birth: Coonabarabran, New South Wales, Australia
Current location: Queanbeyan, New South Wales, Australia
Age: 46 years old
Language/s: English, Dutch
Heritage/Cultural Background: Dutch
LGBTQIA+: No
NDIS Participant: No
Diagnoses: Aqueduct Stenosis (Stage 4), Hydrocephalus, optic atrophy, scoliosis, spastic diplegia
Healthcare Access: Primary Health Care, Allied Health, Mental Health, Community Services, Secondary and Tertiary care

BIO

Kerrie is the oldest living person with grade 4 Aqueduct Stenosis Hydrocephalus in the world, and is a passionate disability advocate with a focus on rare disease and congenital medical conditions. Kerrie was born with Hydrocephalus (fluid on the brain) and was very sick, diagnosed at 4 months with 3 months of intensive care before being able to withstand her first shunt surgery at 7 months. Her parents were told her maximum life expectancy would be 16 years old. The medical evaluation was ‘Aqueduct stenosis’ which was a narrowing of a ventricle to the brain. By the time the shunt was inserted it was too late to prevent the damage to her eye nerves (optic atrophy), spastic diplegia (lower limbs) and frontal lobe.

Kerrie has had much of her life in hospitals with over 100 operations for shunts, orthopaedic, optical, hernia, hysterectomy and a few years ago a gastro feeding tube was inserted, with thousands of procedures in her lifetime. Kerrie has also a blood disorder called Megaloblastic Anaemia. She has walked with sticks and in the last 10 years or so has used a manual wheelchair inside the home and electric chair outside.

Kerrie completed her year 12 Certificate even though the social side of school life was difficult. Kerrie worked at McDonalds for some time, taking orders through the window. The cold air impacted her health and issues developed.

Kerrie did a tertiary HIV/Aids education certification, and is currently doing a Dutch language diploma. She has also done a lot of media since childhood and has some close friends in the music industry who have been wonderful supporters. In 1992, Kerrie was unexpected invited into the realm of the Australian music industry with many artists and producers adopting her into their personal lives and the combination of such love and support fuelled 32 years of work designing posters and promotional material for the biggest artists in Australia - such as Delta Goodrem, Jon Stevens, Angry Anderson, Human Nature and International artists Elton John, Pink and Madonna. 

Many Doctors have been involved with Kerrie’s treatments. Severe headaches and vomiting have increasingly been a part of Kerrie’s life and the Neurosurgeon decided he could do no more to help. She was referred to Palliative Care for 3 years, and then later to a pain team. The management of pain since then has been insufficient. Kerrie does not seem to fit any boxes, as she doesn’t have cancer or a degenerative illness. No-one seems to be able to comprehend her situation of leaking cerebral fluid (CSF) throughout her body (eyes/ears/throat and in a open wound in her foot).

Kerrie has survived enormous medical intervention and really has a very strong will to live even though she lives with unbearable pain.

ACHIEVEMENTS

  • Concert promotion and event co-ordination for established Musicians

  • Featured in press releases and media globally since childhood

  • Received a Grade 12 Certificate of Education (high school) and completed a qualification in HIV/Aids education

  • Delivered HIV education in ACT schools

  • Participated in focus group to improve access to Telehealth

LINKS