Research Article: J LOADSMAN and Michelle Donelly

Foundation of HOPE Therapies is the brainchild of company Director and principle Occupational Therapist Jana-Jade Loadsman. Jana spent most of her life on the Tweed Coast, in Northern NSW. And this is where she not only met the love of her life of more than 20 years, but it’s also where she had her 5 beautiful babies!

After enjoying a long career in hospitality and business management, running her own family business prior to completing her Occupational Therapy degree qualification, and following the birth of their 5 beautiful children, 3 of whom have an inherited congenital chromosome abnormality, resulting in Alagille Syndrome, organ failure, epilepsy, growth delay, PEG feeding and various stages of developmental delay, Jana decided it was time to make a serious mark on the world and so enrolled within her Occupational Therapy degree at Southern Cross University Gold Coast Campus in 2013. 

Jana successfully completed her Occupational Therapy degree, graduating with honours, in late 2018, and only ever had one goal: To change the world one family at a time. 

This dream stemmed from a long and often challenging journey through the local and interstate medical and health systems, and the demands placed on and within families, whilst navigating her way through her own children's illnesses and disabilities. 

Three of Jana's own children have battled the various effects of an inherited chromosome abnormality, which had resulted in two of her children inheriting a Jagged 1 chromosome abnormality, which resulted in Alagille syndrome. A multi system genetic disorder that effects the liver, heart, eyes, spine, kidneys and often results in developmental delay and failure to thrive. Jana's other daughter however, inherited a "mirror opposite" genetic translocation of no name, which has seen Jana's second daughter, experience a significant epilepsy disorder resulting in all types of seizures, growth anomalies, behavioural issues, and developmental delay.

However, it was Jana's youngest child, and the baby of the family, little Harper, experiencing the worst of the Alagille Syndrome condition following her birth in late 2014. Coupled with Biliary Atresia, little Harper spent most of the first 3 years of her life in Brisbane Childrens Hospital, with extensive failure to thrive, significant feeding issues, multiple surgeries, extensive medical interventions and a failing liver, which resulted in Harper requiring a lifesaving liver transplant in October 2017. However, Harper's recovery was full of often very severe and serious complications, which required Jana to advocate extensively for her baby daughter, in order for her to survive. All awhile caring for her 4 other children, in a city that she didn't even reside. And if life wasn't complicated enough for Jana, she also assisted with supporting her father to health following a very significant traumatic brain injury in early 2013, and aided her own mother to pass away at home in 2015, following a very quick battle with brain cancer. All a while her own daughter was fighting for her life in a Brisbane Children's Hospital.

This journey to and through both her children's and family's complicated diagnoses and health conditions, has not only taught Jana ALOT when it comes to family advocacy, occupational therapy and fighting for the health and wellbeing of your child; But it also empowered her to want to make more of a difference for other families going through a similar journey...

So when the opportunity was presented to Jana to complete an honours research thesis on 'Family wellbeing, when the family includes a child with a disability and complex medical condition in regional, rural and remote Australia', Jana jumped at the chance. And after its successful completion in early 2019, it has just been announced that this immensely important research HAS NOW been published in the internationally renowned Journal of Disability and Society!!

See HERE: Exploring the wellbeing of Australian families engaging with the National Disability Insurance Scheme in rural and regional areas

https://www.tandfonline.com/doi/full/10.1080/09687599.2020.1804327

And so coupled with clinical research, her own experiences navigating the often challenging world of disability and health care, and seeing the effects on family wellbeing when the family is caring for a child or children with either one or both of a complex medical condition or disability in outer urban communities, Jana is determined that more is needed to be done to ensure that change WILL be implemented at all levels of society. But this requires an extensive evidence base to support family claims, to ensure changes can be implemented at the right levels. And so Jana has also taken her research thesis to PhD!!! Taking a longitudinal analysis of Understanding the wellbeing of families engaging with the NDIS in Regional Communities in Mid North Coast NSW. Jana hopes to be completed by Mid 2023. So look out for this!

If you would like to discuss any more information about the Foundation of HOPE Therapies, or to discuss how Occupational Therapy can help you or your loved one, don't hesitate to contact us today: Phone 0481 716 504 or Email: admin@foundationofhopetherapies.com