A Rare Bone Disease & Alzhiemers..A New Urgent Need

Hi Everyone,

We have a new quite urgent need.

With Peter's health deteriorating and Sam's bone disease progressing to a new level where her lumbar spine at l4/l5 is now creating paralysis in both legs with debilitating pain and complete instability, we need to add a power aide to her manual wheelchair to enable her as much as possible and keep her safe.

Peter's diagnosis of Alzhiemers has brought so many challenges, one being he can now only care for Sam in a limited capacity. Sam needs independent mobility for safety, to get to Peter in emergencies and to have an electric chair system that is lightweight and easy for carers when attending/transporting Sam to appointments etc.

Her manual wheelchair is custom made for Sam and perfect for transporting in a car so we only need to power assist it with an easy to use product and all will be good.

I've attached links to the type of devices we are looking at below.

https://astris-pme.com.au/todo-drive-power-assist

https://www.mobilitycare.net.au/buy/light-drive-wheelchair-power-assist/?gad_source=1&gclid=CjwKCAjwxNW2BhAkEiwA24Cm9N3SWPZ8KrcqHxlenw5xrAOPyLbsVXT42Z2ncZAycJQm3gbhJGtbBBoCRoYQAvD_BwE

My OT can get a safe and recommended device for around $7000 and I will be working with her to ensure we get the correct power assist device for our needs.

The problem is I'm not eligible for NDIS funding for this as they have already funded 2 wheelchairs and I did have a power assist originally for my manual chair but it just was a nightmare to set up and so we gave it to others who it did work for.

A massive electric wheelchair was funded but it couldn't go in a car or fit in our home and it was so huge I couldn't get in it. This chair has now been re homed to a lovely gentleman with severe muscular dystrophy .

So these new power assist options are perfect for our manual chair and will be life changing for Sam.

Any assistance would help us so much to work towards achieving this essential goal.

Thanks so much for reading and considering sharing this page or donating if possible.

Love and blessings,

Sam and Peter

“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 and 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 in 14 years. 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 at least 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:

www.mymedmusings.com

Peter is Sam's full-time carer and receives an aged pension and Sam receives a disability pension.

However, to add to life's challenges Peter has just been diagnosed with severe short term memory loss/dementia.

Due to ongoing medical expenses, all savings have been used and a large personal loan accumulated. There is no ability to stretch the fortnightly pension any further. 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 does have 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 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 with his own health struggles routine and familiar structure is crucial to managing his dementia/short term memory loss.

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.

There are always upcoming tests and procedures following Specialist appointments, causing us to struggle further financially.

By our calculations we need $11000 to:

1. Cover unexpected costs related to Sam's health.

2. Cover our ongoing known fortnightly living/medical expenses gap.

3. Assists with paying the large medical personal loan accrued over the past 10 years due to the 20 surgeries, numerous tests and procedures and medical appointments.

4. 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 ❤️