A Helping Hand Needed Due To A Rare Bone Disease
“It Takes a Village” is such a familiar phrase for most of us, isn’t it.
We never thought we would need a Go Fund me account but have come to realise there are times in all our lives when we simply need to ask for help from a "village" of people, who may be able to assist just a little, so we can raise just enough.
For those who don't know us, we are Samantha (Sam) and Peter and we find ourselves in need of "village" support to help us achieve an important financial goal.
As family and friends know Sam's health has become a spiralling journey for 14 years since she was diagnosed with a rare bone disease, causing widespread pathological fractures throughout her body. She had no option but to retire from a successful and rewarding career as an Executive Manager in a Financial institution. Her left femur pathologically broke in two in 2014 as she was walking to her bedroom door. She should have been in a major car crash to have sustained such an injury and we are so blessed her femoral artery wasn't severed. As a result, she was diagnosed with a rare bone disease believed to be caused by a mutant gene. Her bones become dense as her bone turnover is neglible, creating diseased bone and ultimately breaks, fractures and spinal stenosis. Other serious medical issues have presented which may or may not be related. Her medical team are unsure as her case is so complex.
Sam has had 20 surgeries and her right femur has also fractured twice. She has a permanent stoma due to prolapses and her lumbar spine is now completely unstable, but inoperable due to the integrity of her bones. Her broken bones don't heal. She constantly has 8 foot fractures, some chronic, some acute. There is unfortunately no treatment or cure for this progressive disease.
Sam remains positive and has found ways to keep her mind active as an author and a blogger, and a patient advocate, volunteering online with various organisations, including Arthritis Queensland. She is also the founder of a global FB support group for people with chronic illness, called Medical Musings with Friends. You can read more of her story here:
Peter is Sam's full-time carer and receives an aged pension and Sam receives a disability pension. Due to our ongoing medical expenses, we have used our savings, accumulated a large personal loan and, like many others, are living pension to pension. It's only thanks to some beautiful friends, generously lending us some money over the past months, have we managed to keep our heads above water financially.
Sam has an NDIS package which helps us with carers and mobility equipment, medical consumables, allied health professionals etc and we are so grateful for this assistance.
Ideally, we really need to release equity from our home to have a small amount of savings to supplement ouqr pension for medical expenses, including essential out of pocket costs for Specialist and GP appointments, prescriptions etc. We are also short each fortnight, after paying essential bills, with basic living expenses like food and petrol.
However, we own a home in an over 50s lifestyle village and these can't be used for reverse mortgage loans, which would have been the perfect solution to release equity and remain settled in our current home. Moving is not recommended due to the impact it will have physically on Sam, plus Peter is now in his 80's and has his own health struggles.
This means the money we raise here will be so important to help fund us to stay in our existing home for as long as possible.
Sam has 8 Specialists monitoring and managing her disease so you can imagine the cost of this.
October and November are full of important medical appointments.
There are always upcoming tests and procedures following these appointments, causing us to struggle further with the basic cost of living expenses.
By our calculations we need $6000 - $8000 to:
1. It allows for unexpected costs related to Sam's health.
2. It's enough to cover our ongoing known fortnightly living/medical expenses gap.
3. It assists with paying a large medical personal loan accrued over the past 10 years due to the 20 surgeries, numerous tests and procedures and medical appointments.
4. It covers minor modifications, not funded by NDIS, to help us better arrange our existing home to work with Sam's progressive disability.
Any help would be gratefully received and if you are unable to give financially your prayer support and sharing our page, with your family, friends, and colleagues if possible, would be wonderful.
Thank you so much from the bottom of our hearts.
Sam and Peter ❤️
