STM Report #2

Background

My journey started with a conversation at a family Christmas lunch with my sister who is the head social worker at a Disability Services Agency. She has worked with special needs children and their families for over 30 years but has never made a song and dance about the day-to-day struggles faced by these children and their families.

I told her about what STM does and said it was my turn to put the readies to work. We got talking about what she does, who she helps and how it works. Her message was clear: disadvantage in all its many forms has a bad habit of clustering in the community. Most families who seek the agency’s help for their disabled children are often economically and socially disadvantaged themselves. They often struggle with English. This mix of disadvantage can be overwhelming for these families as they navigate day- to- day living. These families often have nowhere else to turn.

My sister had a talk to her early childhood support services team about the opportunity. They were very excited about the prospect of some quick and direct funding and suggested that two children from south-western Sydney would benefit greatly from immediate access to equipment that STM’s funds would purchase. The equipment will be purchased in March by the agency and will be used immediately by the children.

Child #1

The first beneficiary is a 5-year-old boy who has Spinal Muscular Atrophy. This is a severe degenerative muscle condition that results in progressive muscle wasting and weakness. The condition also causes accumulation of secretions in the lungs or throat which cannot be cleared due to an inability to cough fully. As a result, the child has already had numerous hospital admissions with pneumonia. A supportive chair would position him well which may help to reduce this problem.

The boy lives in a small flat with his mother and extended family and now sits slumped on the sofa. This is not good for his spine and internal organs. This child needs a supportive chair to allow him to sit with good posture and prevent future damage. A supportive chair would enable him to play, eat and do his schoolwork independently and safely. The occupational therapist will be able to help the mother to identify a suitable chair which will cost around $700.

Child #2

The second beneficiary is a 5-year-old boy who has Ataxia Telangiectasia. This is a very rare and degenerative neurological condition. The boy is unable to control his movements and is only able to walk very short distances. He has grown out of the stroller he used when he was younger. His father is able to carry him with difficulty, but his mother is unable to carry him at all. The family are facing other worries as the boy’s 7-year-old brother and grandmother both have serious medical conditions that need ongoing treatment.

The child is now on a waiting list for a wheelchair but this will take up to a year for funding to be approved and in the meantime he continues to grow and get heavier. The occupational therapist has recommended that he use a large stroller suitable for an older child but this stroller will cost $1,300 and the family are unable to afford to purchase the stroller.

A stroller would enable him to access the community with his family. It would prevent the stress and strain of carrying him and would be used immediately everyday. Even after he gets his wheelchair, the family will be able to continue to use the stroller for occasions when a wheelchair is difficult to manage.

Finally…

I’d like to thank my STM colleagues for their generosity in making a real difference to the lives of these two children who have personal mountains to climb on a daily basis and giving me the chance to go down this road with my sister.