Families living outside of the Perth metropolitan area whose child is a hospital inpatient often face large out of pocket expenses such as travel and accommodation costs that can add up to thousands of dollars. Such financial pressure adds significantly to the stress families are already feeling. The PMH Foundation Regional Assistance Fund is a key source of support for families during this time, like that of 2 and a half year old Harley.
Harley made his first trip to Princess Margaret Hospital from his home in Australind via the Royal Flying Doctor Service at just four days of age.
Harley has Trisomy 9 Mosaic, a rare chromosomal disorder in which the entire 9th chromosome appears three times rather than twice in some cells of the body. Common features of the syndrome include growth deficiency before birth; mental retardation; congenital heart defects; and distinctive abnormalities of the skull and facial region. It is also frequently characterised by musculoskeletal, genital, kidney, and/or additional physical abnormalities. Little Harley experiences a number of these and has been given a tracheotomy to help him breathe.
Coping with Harley’s condition has put an enormous emotional and financial strain on his family. Managing his tracheotomy involves his parents, Carla and Aaron, doing three to four suction sessions every hour, 24 hours a day, seven days a week. In order to cope when Harley was first diagnosed, Aaron had to give up work to take on the night shift of Harley’s care, leaving Carla to look after Harley and his four older sisters – Jaylah, Sarina, Ruby and Makayla – during the day.
Harley and his family have a long road ahead of them which will include countless visits and admissions to PMH.
“The emotional impact of my baby boy’s health, mixed in with the high care that he needs, is an enormous worry to our family let alone the constant stress of how we are going to cope financially,”
“If it wasn’t for the support we receive from the PMH Foundation Regional Assistance Fund we wouldn’t be able to spend as much time as we do as a family as we couldn’t afford to bring the girls with us when Harley is in hospital. It is so important for us to be together as a family during these times,” explains Carla.
“PMH Foundation has helped with some of the financial strain of Harley’s condition by covering our accommodation costs when we have to be up in PMH. This has proved to be Godsend as without it we would not have been able to spend as much time together as a family. The fund also ensured we all got to spend Christmas in 2014 together as Harley was in PMH at the time.”
The PMH Foundation regional assistance program covered the cost of 1,700 night’s accommodation for families like Harley’s in the 2014/2015 financial year.