“It Takes a Village” is such a familiar phrase for most of us, isn’t it.
We never thought we would need to fundraise 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 and followers of this blog 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 that may or may not be related. Her medical team is unsure as her case is so complex.
Sam has had 20 surgeries. 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, blogger, podcastor, and 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 husband of 28 years and full-time carer. Due to our ongoing medical expenses and living on a pension, we have no savings, and like many others, are living fortnight to fortnight. It’s only thanks to some beautiful friends, generously lending or gifting us some money when we couldn’t make ends meet, have we managed to keep our heads above water financially.
Sam has an NDIS package (Australian Disability Care Package), which helps us with carers and mobility equipment, medical consumables, allied health professionals, etc, and we are beyond grateful for this assistance.
Ideally, we really need to release equity from our home to have a small amount of savings to supplement our pension for medical expenses, including essential out of pocket costs for Specialist and GP appointments, prescriptions etc.
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.
If we did sell our home, we would need to move to a home that is disability friendly, as Sam can now only mobilise with a walker/wheelchair inside the house and only a wheelchair outside of the home.
Our current home has been modified to some degree and we continue to work with Sam’s Occupational Therapist to apply for home modifications as required, which are thankfully funded through NDIS.
Based on medical advise it is better for us not to move house if possible, as we may very well need to move in a few years into assisted living accommodation, so it’s best to wait until then and only have one move in our future rather than two.
This means the money we raise is so important to help fund us to stay in our existing home for as long as possible.
Sam has eight Specialists monitoring and managing her disease so you can imagine the cost of this.
There are always upcoming tests and procedures following appointments, causing us to struggle further with the basic cost of living expenses.
By our calculations, we need an extra $6000 – $8000 annually to:
1. Allow for unexpected costs related to Sam and Peter’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.
5. Sam’s blog, podcast, forum, and patient advocacy work also have costs to maintain. My Medical Musings has reached so many people and helped them feel genuinely understood and cared for in their own life changing chronic illness journeys. Any financial assistance towards this work would be wonderful as Sam is committed to keeping it all going while it is connecting effectively with others and while she is able.
Any help would be gratefully received, including a small donation (even $5 helps), or your prayer support and sharing our fundraising page, with your family, friends, and colleagues if possible, would be wonderful.
Here is the fundraising page link:
Thank you so much from the bottom of our hearts.
Sam and Peter ❤️
My Medical Musings 