Holly's Power Chair Funding

My names Holly and I am 20 years old. I live in the UK and I suffer from multiple Chronic Illnesses. I first became ill aged 3 but I was never diagnosed and the problem went away. Although after several hits of Cold/Flu, Tonsillitis, Laryngitis and Gastroenteritis age 9 I became very sick. At age 10 I was diagnosed with a Rare Autoimmune Disease called Juvenile Dermatomyositis.


Despite being cleared of the cruel disease a few years ago, I have since been diagnosed with Chronic Fatigue Syndrome, Chronic Pain including Chronic Back Pain, Hypermobility Syndrome, Complex Regional Pain Syndrome, Scoliosis and several gastro conditions including Oesophageal Dysmotility. (If you would like to know more about my conditions then please read my blog post 'My Chronic World in my Words' here). 

Due to my conditions deteriorating at the start of this year I was forced to give up work entirely back in May. Until the start of 2017 I have been reliant on crutches or a walking stick for the last 8 years, with the occasional use of a wheelchair for whole day outings or extremely bad days. However, this year I became completely reliant on a wheelchair to enable me to get out of the house. Although I had a wheelchair for occasional use it was not at all suitable for me. Therefore, in April I received a custom built wheelchair with the support of my family.

 This was a self propel wheelchair built for everyday purpose to allow me to get out of the house and enjoy my life again unlike the previous few months. Having this new wheelchair had given me my life back and I couldn’t have been happier despite the constant excruciating pain and fatigue. 


However, it has very quickly become apparent that my health is continuing to deteriorate and I am now in urgent need of a power wheelchair. I am reliant on a wheelchair to get me out due to my Chronic Pain and Chronic Back Pain. Standing for more than 30 seconds leaves me in severe amounts of pain and walking further than from my house to my car leaves me in tears 95% of the time. Unfortunately, it is not just my pain and fatigue that have gotten worse but my Hypermobility Syndrome also.

Hypermobility Syndrome causes hypermobile joints and lax ligaments. Therefore, I am more prone to and at risk of dislocations and subluxations. My fingers and thumbs sublux several times a day. Each subluxation leaving me in severe amounts of pain for at least a few days. This year my shoulders have also begun to sublux, leaving me at worst with my arm in a sling for six and a half weeks. My pain still continues and I am still in need of assistance for most things that require me to lift my arms up. It also causes extreme amounts of pain when trying to do the motion needed to self propel a wheelchair. It is only recently that I have begun to weight bare again. Unfortunately, this problem is not limited to my right shoulder but is also a problem in my left now too.




This therefore leaves me needing the assistance of a power wheelchair to be able to go out, to enjoy life, to do the things that every other person does let a lone a 20-year-old. The wheelchair I currently have is less than a year old and if it weren’t for it’s lack of power would be extremely suitable. I am able to get it in and out of my car independently due to its weight (I have a Kuschall Ultralight), it is also extremely comfortable and fits me well. It is crucial that I have a chair that “fits me”, that I am comfortable in due to my intense pain levels. It is also crucial to me to have a chair that I am able to use independently, to be able to get it in and out of my car so I can have the independence and freedom that most others do.

I have spent many months looking online and I have been to several mobility stores and have found what I believe to be my perfect solution. The Alber E-Fix 35, the E-Fix is a power add on. The E-Fix product is two wheels with built in motors, a battery pack and joystick controller. It is the top of its range and is still light weight so, although adding weight to my current wheelchair I am still able to get it in and out of my car independently. The E-Fix wheels are put onto my chair as you would most wheelchair wheels. A bracket where the battery is fixed is then attached at the cross bars underneath the seat and the joystick is added by a bracket towards the front of the chair.




Before receiving my wheelchair, I became too afraid to go out for even the short distances I could sort of manage due to the excruciating pain and tremendous fear that ‘something bad could happen’. As my legs often give way from underneath me and my pain becomes unbearable. Since I am now unable to self propel and I am completely reliant on other people to get me out of the house for example, my partner who works full-time which leaves me essentially house bound. I feel the word petrified is not an exaggeration of the fear and frustration I feel of being almost completely house bound.

For those that may ask no, I am not entitled to wheelchairs through the NHS Wheelchair Services and they do not provide something that would be suitable let alone anything as great as this.

The Alber E-Fix 35 could completely change my life. After testing the E-Fix in another wheelchair at the Wheelchair Specialists I have not stopped thinking about it and numerous independency possibilities. I tested the wheelchair with my partner who told me he hadn’t seen me smile that way in a very long time. Therefore…

If you are able to I ask you to please donate to help me reach my goal of £4,775 for the Alber E-Fix 35, for my life and independence back. For anyone who can’t or chose not to donate I ask if you could share this page and share my story to help me reach my goal for independence.  

Thank you,
Holly