Help Fyn to move independently
Donation protected
“But you don’t look sick” has been a phrase on repeat throughout the young life of Fynlay McGavin.
Fynlay has been diagnosed with multiple serious and complex health conditions in his 23 years.
This has taken a great physical, emotional and financial toll on both him and his family..
Who is Fynlay ?
Fynlay is a down to earth , kind hearted and caring young man who often puts the needs and emotions of others before his own. He has persisted and worked hard at his studies despite the multiple serious health challenges he has faced. Fynlay has just graduated university and he aims to gain more independence whilst chasing his dreams and aspirations, but there is a long road ahead and right now, he desperately needs financial assistance.
From a young age Fynlay started to experience a growing range of health issues and complications which left his growing team of paediatric specialists perplexed, their concerns were growing as attempts to find the cause/s remained elusive. Symptoms often included extreme nausea, vomiting, reflux, multiple dislocations, many bone fractures and failing hip joints.
By the age of 14 Fynlay had already endured multiple major surgeries and a complex array of ongoing tests , scans and treatments. Then in March of 2014 his health took a major turn, when Fynlay presented with jaundice and specialists found a large tumour between his pancreas and liver. Initially diagnosed with cancer, some weeks later the diagnosis was changed to a rare immune mediated disease called IgG4-sclerosing cholangitis. A disease so rare it is often misdiagnosed as cancer with less than 30 children diagnosed world wide at the time. It is a systemic disease which causes fibrosis/scarring of tissues, tumours, organ swelling and failure if left untreated or uncontrolled. Since then Fynlay has been continuously treated with various forms of immunotherapy including oral chemotherapy and monoclonal antibody infusions.
During these years Fynlay also received many more complex healthy diagnoses as his specialists tried to piece his health back together . They include a heart defect , connective tissue disorder with hyper mobility, severe medically induced PTSD and high grade osteoporosis. These additional diagnoses together with his immunosuppressive treatments were the cause of even more fractures in his feet, hands, arms and knees which required many more additional reconstructive surgeries and prolonged episodes of recovery and pain. Since then Fynlay’s rare disease had persistently been stubborn to all attempts of treatment, finally pushing his liver into cirrhosis/ failure by early in 2020.
Fynlay was listed for a liver transplant in September of 2021 and was amazingly blessed with a donor liver in October of the same year. His liver transplant has been life changing in so many ways, but it doesn’t cure his rare disease or the many additional diagnoses he has.
The multiple life long anti rejection medications Fynlay must take every day now impact on his health. In this last year alone smFynlay has developed more acute osteoporosis, TMA (a serious destruction of his red blood cells and kidney damage), Hypophosphatemia (an allergic reaction to an iron infusion causing ongoing critically low phosphate levels), Hypothyroidism, Deep vein thrombosis and seizure like episodes.
After many years Fyn and his family are now struggling with no external financial support. They have applied for NDIS funding again, but expect that it won’t cover all their expenses should it be approved. Fynlay’s medical and mental health needs now greatly outweigh the income of Fyn and his mum. With 8 different specialist teams there are frequent Hospital visits, appointments, pathology, medications, Physio, and hospital parking costs which need to be found each month before Fynlay can even start to think about living a life like his peers.
We would greatly appreciate any support in assisting Fynlay and his family with meeting the following costs which have been identified by his specialists as high needs to help grow his independence and facilitate his ongoing care going forward.
$500 – Ergobaum crutches – (adjustable angles and hand grips to accommodate Fynlay fused wrist , healing and fragile bone)
$7,000 – a new lightweight customised wheelchair better suited to his tall height and fragile bones (his current wheelchair is too small, cannot he modified any more and needs new wheels)
$10,000 – power assist motor for his wheelchair - a wish that will help reduce his fatigue levels and the impacts on his arms and hands.
$20,000 - an assistance dog – to help regulate his PTSD, gain greater independence with help to navigate social situations, hospital visits , unfamiliar places, crowds and night terrors etc. -
$20,000 ? - A ramp (need a quote from builder) or a lift ($20,000) to help Fyn access the family home now and in the future. -
$15,000 to $35,000 - A car with a bigger boot to accommodate Fynlays wheelchair between his medical appointments and his future university studies. (A CRV is around the $35,000 mark but can be much less for a second hand one) -
$2000/year - And associated medical and hospital parking costs which come when frequently attending ongoing appointments (currently parking costs alone total is over $13,000 in last few years, an average of $2,000 a year)
Thank you for your time and support. No matter how big or small it will be life changing.
Tania Lawrie & Gabriela Vicent
Who is Fynlay ?
Fynlay is a down to earth , kind hearted and caring young man who often puts the needs and emotions of others before his own. He has persisted and worked hard at his studies despite the multiple serious health challenges he has faced. Fynlay has just graduated university and he aims to gain more independence whilst chasing his dreams and aspirations, but there is a long road ahead and right now, he desperately needs financial assistance.
From a young age Fynlay started to experience a growing range of health issues and complications which left his growing team of paediatric specialists perplexed, their concerns were growing as attempts to find the cause/s remained elusive. Symptoms often included extreme nausea, vomiting, reflux, multiple dislocations, many bone fractures and failing hip joints.
By the age of 14 Fynlay had already endured multiple major surgeries and a complex array of ongoing tests , scans and treatments. Then in March of 2014 his health took a major turn, when Fynlay presented with jaundice and specialists found a large tumour between his pancreas and liver. Initially diagnosed with cancer, some weeks later the diagnosis was changed to a rare immune mediated disease called IgG4-sclerosing cholangitis. A disease so rare it is often misdiagnosed as cancer with less than 30 children diagnosed world wide at the time. It is a systemic disease which causes fibrosis/scarring of tissues, tumours, organ swelling and failure if left untreated or uncontrolled. Since then Fynlay has been continuously treated with various forms of immunotherapy including oral chemotherapy and monoclonal antibody infusions.
During these years Fynlay also received many more complex healthy diagnoses as his specialists tried to piece his health back together . They include a heart defect , connective tissue disorder with hyper mobility, severe medically induced PTSD and high grade osteoporosis. These additional diagnoses together with his immunosuppressive treatments were the cause of even more fractures in his feet, hands, arms and knees which required many more additional reconstructive surgeries and prolonged episodes of recovery and pain. Since then Fynlay’s rare disease had persistently been stubborn to all attempts of treatment, finally pushing his liver into cirrhosis/ failure by early in 2020.
Fynlay was listed for a liver transplant in September of 2021 and was amazingly blessed with a donor liver in October of the same year. His liver transplant has been life changing in so many ways, but it doesn’t cure his rare disease or the many additional diagnoses he has.
The multiple life long anti rejection medications Fynlay must take every day now impact on his health. In this last year alone smFynlay has developed more acute osteoporosis, TMA (a serious destruction of his red blood cells and kidney damage), Hypophosphatemia (an allergic reaction to an iron infusion causing ongoing critically low phosphate levels), Hypothyroidism, Deep vein thrombosis and seizure like episodes.
After many years Fyn and his family are now struggling with no external financial support. They have applied for NDIS funding again, but expect that it won’t cover all their expenses should it be approved. Fynlay’s medical and mental health needs now greatly outweigh the income of Fyn and his mum. With 8 different specialist teams there are frequent Hospital visits, appointments, pathology, medications, Physio, and hospital parking costs which need to be found each month before Fynlay can even start to think about living a life like his peers.
We would greatly appreciate any support in assisting Fynlay and his family with meeting the following costs which have been identified by his specialists as high needs to help grow his independence and facilitate his ongoing care going forward.
$500 – Ergobaum crutches – (adjustable angles and hand grips to accommodate Fynlay fused wrist , healing and fragile bone)
$7,000 – a new lightweight customised wheelchair better suited to his tall height and fragile bones (his current wheelchair is too small, cannot he modified any more and needs new wheels)
$10,000 – power assist motor for his wheelchair - a wish that will help reduce his fatigue levels and the impacts on his arms and hands.
$20,000 - an assistance dog – to help regulate his PTSD, gain greater independence with help to navigate social situations, hospital visits , unfamiliar places, crowds and night terrors etc. -
$20,000 ? - A ramp (need a quote from builder) or a lift ($20,000) to help Fyn access the family home now and in the future. -
$15,000 to $35,000 - A car with a bigger boot to accommodate Fynlays wheelchair between his medical appointments and his future university studies. (A CRV is around the $35,000 mark but can be much less for a second hand one) -
$2000/year - And associated medical and hospital parking costs which come when frequently attending ongoing appointments (currently parking costs alone total is over $13,000 in last few years, an average of $2,000 a year)
Thank you for your time and support. No matter how big or small it will be life changing.
Tania Lawrie & Gabriela Vicent
Organizer and beneficiary
Gabriela Vicent Oliver
Organizer
Fynlay McGavin
Beneficiary