Emma’s Wheelchair Battle
Donation protected
This fundraising campaign is to help me get the wheelchair I desperately need. My current wheelchair was kindly given to me, but is the wrong size and is actually causing my joints to deteriorate quicker than necessary. I am currently working 5x harder in my shoulders to self propel and this is incredibly painful when my shoulders dislocate a few times a day.
About Me -
I’m Emma and I turned 17 in December.
Originally from New Zealand, I now live in the Swan Valley in Perth, Australia and I am continuing Year 11.
What’s Happening br />
I also have a congenital heart defect which was repaired in New Zealand when I was 9 days old.
There is no cure for EDS, so my specialist team is trying to preserve my joints for as long as possible.
Because my dislocations have become too frequent, I am using a wheelchair to get around. Having to use a wheelchair has been huge for me, especially because before my complications I was very active walking 5ks a day and doing ballet and playing soccer with my brother and sister.
What the funds are used for -
As I'm in Australia as a New Zealand citizen and I don't have permanent residency, I have been told that I am ineligible for the NDIS and in December I was rejected from the WANDIS as they told me I would get better.
I have been encouraged by friends and family to share my story- those who know me well know that I’m feeling very uncomfortable about making this public and asking for support.
It is a very difficult position that myself and my parents have been put in, as I have to take many medications and endless appointments, where there is still a large gap for specialist services, that my parents pay out of pocket. There is currently no funding available for me to get a wheelchair and power assist.
Even with Medicare doctors’ appointments still come with significant out of pocket expenses (my rheumatologist alone costs $400 hour and Medicare rebate $123)so after covering the gaps, things like highly recommended physiotherapy to strengthen muscles and the power assist for my wheelchair are beyond affordability.
Any funds raised will be used to cover the 'Power Assist' (Approximately $9500) and a customised wheelchair that fits me correctly ($6500). Anything left over will contribute towards out of pocket expenses for specialist appointments upcoming- including rheumatology and physiotherapy. I have just recently had a functional assessment with an OT and this is what they have told me will help me.
I am doing fund raising because I am in a situation I cannot get through on my own, being unable to access support in Australia and being refused support in my home country. The 'Power Assist' would allow me to get my mobility back that EDS has taken away from me. While I am trying to think positive, it has been incredibly difficult to process what is happening to my body. Asking for help doesn’t come easy, but after encouragement from friends and family I decided to take this step.
Thank you so much for reading this far and for being so encouraging.
I now have some hope for the future.
Love,
Emma
I’m Emma and I turned 17 in December.
Originally from New Zealand, I now live in the Swan Valley in Perth, Australia and I am continuing Year 11.
What’s Happening br />
I also have a congenital heart defect which was repaired in New Zealand when I was 9 days old.
There is no cure for EDS, so my specialist team is trying to preserve my joints for as long as possible.
Because my dislocations have become too frequent, I am using a wheelchair to get around. Having to use a wheelchair has been huge for me, especially because before my complications I was very active walking 5ks a day and doing ballet and playing soccer with my brother and sister.
What the funds are used for -
As I'm in Australia as a New Zealand citizen and I don't have permanent residency, I have been told that I am ineligible for the NDIS and in December I was rejected from the WANDIS as they told me I would get better.
I have been encouraged by friends and family to share my story- those who know me well know that I’m feeling very uncomfortable about making this public and asking for support.
It is a very difficult position that myself and my parents have been put in, as I have to take many medications and endless appointments, where there is still a large gap for specialist services, that my parents pay out of pocket. There is currently no funding available for me to get a wheelchair and power assist.
Even with Medicare doctors’ appointments still come with significant out of pocket expenses (my rheumatologist alone costs $400 hour and Medicare rebate $123)so after covering the gaps, things like highly recommended physiotherapy to strengthen muscles and the power assist for my wheelchair are beyond affordability.
Any funds raised will be used to cover the 'Power Assist' (Approximately $9500) and a customised wheelchair that fits me correctly ($6500). Anything left over will contribute towards out of pocket expenses for specialist appointments upcoming- including rheumatology and physiotherapy. I have just recently had a functional assessment with an OT and this is what they have told me will help me.
I am doing fund raising because I am in a situation I cannot get through on my own, being unable to access support in Australia and being refused support in my home country. The 'Power Assist' would allow me to get my mobility back that EDS has taken away from me. While I am trying to think positive, it has been incredibly difficult to process what is happening to my body. Asking for help doesn’t come easy, but after encouragement from friends and family I decided to take this step.
Thank you so much for reading this far and for being so encouraging.
I now have some hope for the future.
Love,
Emma
Organizer
Harr De Tracy Gould
Organizer
