Steve Waugh Foundation

An example of just some of the many recipients the
Steve Waugh Foundation - Australia have supported.

A little girl was born with a global development disability, which means that she has not developed physically or mentally according to her age. She is 4 years old, but according to developmental assessments she is functioning at around the age of 9 months.

To make her situation more complex, she has not been identified with any particular syndrome therefore it is difficult to plan a course of intervention for her & makes her future very uncertain. Her learning capacity & physical growth is unknown. Her medical condition is also very complex - she has had a cleft palate repair, major oesophagus & stomach surgery, a feeding tube in her tummy & a hearing loss requiring hearing aides. She does not speak hence communication is difficult. She also wears splints on her legs in hope that this will help her to stand in the future.

The family have also had to endure some of life's greatest challenges - in 1997 a baby boy was lost at birth. He was a twin & his surviving brother (now 7) suffers from cerebral palsy which requires ongoing treatment. Life for the family is complex & challenging. The constant stream of medical appointments, surgery, therapy, equipment & medications regularly places huge pressure on this family both emotionally & financially.

A 4 year old little boy with Severe Immuno Deficiency Syndrome - a rare genetic condition for which he has been hospitalised many times since he was 6 months old. He has had two bone marrow transplants with many complications. His growth and development have been significantly delayed because he has been so ill. He is fed through a tube and requires constant care. His home is two hours drive from the hospital. His father continued to work while his mother stayed at the hospital. Extra living expenses such at food, telephone and travel to and from the hospital made the family's living expenses higher than normal. The financial, physical and emotional stress that this prolonged situation put on the parents contributed towards their recent separation.

His mother is now a single parent on single parent pension who lives alone with her son. She is exhausted and desperately in need of rest. SWF committed to provide 1 year of fully paid respite care.

This family of 5 comprises of mother, father and three children. The oldest child is 2 and has haemophilia and the twins are 9 months old. One of the twins has been in hospital for 7 months. He has serious bowel problems which have required surgery, is fed by drip and has significant hearing loss that requires him to wear hearing aids & have special intervention from a teacher of the deaf so he will learn to speak.

His father is working & his mother is finding it increasingly difficult to meet the changing needs of the three children and manage the household. The two year old now goes to child care two days a week and mother visits the baby with his twin every day. Her visits are very important to develop his attachment to his mother and for her to work with him to encourage his speech development in these important months.

SWF donates $540 per week to pay for all child care costs to free the mother for these essential interactions with her sick baby.

A little boy 19 months old has been in hospital since birth. He has Barnes Syndrome & has a tracheotomy, requiring ventilation. He has two regular ward grannies that spend the majority of the week with him providing stimulating activities in his room.

Furthermore, his life has been made even more complicated through a complex family environment and currently he is in the care of the Department of Community Services. Sadly he is unable to be transported outside as he does not have a buggy or seating system so is nursed primarily in bed. The buggy required needs to have sufficient postural supports in order for him to maintain his posture as well as having room to accommodate a portable ventilator and tray. A commercially available buggy is not suitable for his complex needs. The selected buggy has a significant amount of growth and will therefore see him through for a number of years ahead.

The provision of this equipment would improve the quality of his life significantly as it would provide him with the opportunity to be transported out of his hospital room and to interact with the world outdoors. SWF to purchase the buggy he requires.

Recipient 5.

A 2 year old girl was born with an extremely rare condition called Jeune Thoracic Dystrophy. One of the main consequences of this illness is a small thoracic cage which in effect prevents the lungs from growing. Despite surgical intervention in 2003 to expand her thoracic cage to allow for improving lung function, she has remained dependant on a ventilator to assist in her breathing 24 hours a day and has spent her entire life in hospital.

Her illness & prolonged hospitalisation has had an impact on her development as she has been unable to undertake normal toddler activities. Her family together with therapy staff have sought ways to improve her social & emotional development and bring some 'normality' to her life. She has responded resoundingly and there have been great strides in her development.

She is a delightful 2 year old who interacts well with her family and staff. A major priority is her physical development. As a consequence of her illness, she also has short stature which makes milestones such as walking particularly challenging.

She desperately needs a tricycle to not only help in her physical development but it will also give her a degree of mobility and freedom. The tricycle will be specifically developed & built so it can be easily adapted by the physiotherapists as she grows over the coming years. This little girl's situation has placed a significant strain on her parents who are unable to afford this added expense.

The parents lived within the hospital for the first year of the childs life while the older sister lived with her grandparents so the family was torn. The parents eventually sold their home to buy a home close to the hospital which allowed the older sister to live with her family again. The family commute to the hospital every day. The father is the sole income earner & relies on commission for his wage. Due to mounting financial strains, the family have recently been forced to renegotiate their home mortgage. They have no savings or capacity to purchase this much needed tricycle. SWF will purchase the tricycle for this little girl.

Nine year old boy who was born prematurely. His mother and father were very young and the mother abandoned him in the hospital after severe birth anomalies were confirmed. His dad and grandmother have been amazing and have cared for him since this time. He has non ketotic hyperglycinaemia, spastic quadriplegia, epilepsy, hip sunbluxation and many other problems. In other words he is in a wheelchair or his bed only and until recently enjoyed life with a smile.

However due to his medical needs (a hip operation) he is in a lot of pain and requiring serious drugs. One of the things that does not help his pain is his bed. He has seriously grown out of his hospital bed as he has become taller and this is causing additional pain due to the inability for his carers to make him comfortable.

The Senior Social Worker from Pain & Palliative Care has approached the Occupational Therapy Department to assess his needs on an urgent basis and obtain a quote for a new bed. The dad is on Carer Payment and it would take up to a year to get a bed under the social system. He can't wait this long, the pain is compromising his quality of life. This family has never asked for help from anyone and have plodded on, based on their unquestionable devotion and love for this child.

SWF will purchase the much needed electronic bed. Not only will this child now be relieved of pain but his elderly grandmother will be saved from having to lift her grandson.

A 12 month old little boy was transferred to the Intensive Care Ward from the New Born Care Nursery at birth. He has Velocardiofacial Syndrome & Absent Pul Valves. As a result of this condition he relies on ventilation to breath & requires 'one on one' care at all times. His parents have 5 older children ranging in ages from 4yrs to their eldest child who is currently studying for his HSC. Dad works full-time to support the entire family & Mum spends her time between caring for the children at home & attending to their baby in hospital. The financial strain placed on this family due to their babies medical condition is quite significant. Mum is unable to seek employment & the family are struggling to meet the financial demands of raising 6 children.

The year old sibling is the only child who is not at school therefore needs to attend the Intensive Care Ward (ICW) regularly with Mum. This situation causes significant stress as the ICW is not a child friendly environment - it can be very difficult to have a young child present for long periods on this ward. The hospital is requesting that Mum attend the hospital on a regular basis to learn how to attend to her babies ongoing care needs to prepare her for the eventual discharge home. This little boy has many complex needs therefore it is important Mum attends the hospital to be educated as well as meet her babies social & emotional needs.

When this child is eventually discharged, it will place even further stress on Mum to meet his ongoing care needs. Mum would like to increase the days that the 4 year old sibling attends Child Care however the financial strain prevents this.

Currently 4year old sister attends one day a week but the family would like to increase to 3 days. SWF to pay for 3 extra days of Child Care per week for 12 mths.

A little boy has a degenerative condition which has resulted in this child having no active movement of his body. He is dependant on a ventilator 24hrs a day. He desperately requires a specialised buggy with sculpt seat cushion and extended lateral headrest for postural support & to accommodate his ventilator. The parents are in a difficult financial position & have a Family Health Card. They could never afford to purchase this buggy that will allow him to leave his hospital bedroom. SWF to pay $5597.00 for the much needed buggy.

A 12 month old little boy has been hospitalised since shortly after birth. His disability means he is dependant on a ventilator at all times. He is unable to leave his hospital bedroom or access the community as he is unable to transport his ventilator & equipment. The parents are in a compromised financial position. They have a Family Health Card. SWF to purchase the buggy at a cost of $5178.00.

A little boy is an only child who lives with his single mother. His parents are separated and his father lives in America. His mother is a very positive & determined parent who is well informed of her son's medical condition and in tune with his needs.

This little boy was a normal 2 year old when he contracted Pneumococcal Meningitis & as a result he has sustained a severe brain injury. He also has extensive physical disabilities and is presently unable to walk or crawl.

This child also has hemiplegia which is a right sided weakness - much like a stroke patient. He has dystonia (fluctuating and variable tone in his muscles) affecting all his limbs, which impacts on his ability to control & coordinate limb movement.

He has lost his hearing & received cochlear implants on 29-11-2005. He now attends the Deafness Centre for Rehabilitation and does not have any formal speech but sometimes is able to vocalise some single words - mainly in Turkish.

Prior to this child's illness he was bilingual. Since the cochlear implants, he has indicated that he understands alot of basic communications. Currently he is being fed by a nasogastric tube which leads directly into his stomach. He is unable to feed orally due to excessive secretions and silent aspiration. If fed orally his feeds could end up in his lungs, predisposing him to pneumonia. He regularly requires suctioning to prevent aspiration. Apnotic episodes during sleep means that he can stop breathing when asleep. He therefore requires oxygen at all times when sleeping.

This child also suffers from Epilepsy. He desperately requires a buggy to provide him with lateral support for his spine & head, good harnesses for support & safely, tilt-in space option for safe feeding & personal comfort. The buggy will position the child safely & comfortably for transportation and allow him to interact with his environment. The buggy will make it easier for Mum to take her son on outings. In spite of all odds, this little boy continues to show improvement with his medical condition & therapy. Play is incorporated into a significant part of his physiotherapy & occupational therapy. He loves to play & does not allow his physical disabilities to limit him. The cost of the buggy is $5053.00 & is vital in maintaining appropriate posture and safety. SWF will purchase the much needed buggy.