What is Rare Disease Day?
My Journey with Rare Conditions
I started my career as a Pediatric Physiotherapist in 1979.
The first time I remember seeing a child with a rare condition was in 1981 when I was working at the Children's Hospital in Adelaide.
I was treating this little girl who had an unknown genetic condition that looked like muscular dystrophy. The doctors did every available test known at the time but could not get answers.
It became obvious that her condition was progressive and she passed away within 2 years. I still remember the grief of all involved in her case.
From there I have endeavoured to assist parents when they are seeking answers for their child's condition.
What support does Therapies For Kids (TFK) provide?
- Listen to parents/caregivers as we embark on this journey together
- Encourage parents/caregivers to seek expert advice and be involved in any research
- Work closely with parents/caregivers to provide therapy and support on an individual basis for their child
- Provide their child a friendly enriched environment and continue to seek the best current knowledge on rare diseases and their treatments
My role at TFK
Over the years, as I have developed the understanding of the impact of trying to find a diagnosis for a child with a rare condition, I have tried to be available to listen whenever a parent/caregiver needs assistance.
Many times parents/caregivers just need to be able to talk to someone who can be objective but who has had experience with medical practitioners and the language that is so new, unknown and defines the child in a new way.
I feel that it is so important to reassure the parent/caregiver that I do not see their child as a diagnosis but as an individual who needs to be recognised for their unique characteristics.
Sometimes just asking "how are you doing?" is enough to allow a parent/caregiver to express their thoughts and concerns for their child.
I hope that I can continue to provide parents/caregivers support at TFK.