Please help me access education by removing daily barriers.

Hi! Im Phoebe im 16 and from Norfolk, England. I need a new wheelchair.

When i was little I developed a disease called rheumatic fever, which has left me with life long health risk, it changed my life in so many ways. It completely attacked my body leaving me with ME/CFS, POTS, autoimmune arthritis and autoimmune neurological disease. I also have HSD/probable Hyper-mobile Elhers Danlos syndrome which has led to spinal fusion and consistent joint subluxation/dislocation. Making every day tasks difficult, something as simple as tying my shoe or holding a pen. With my autoimmune neurological disease it unpredictably causes dystonia and seizures. My left foot was in a dystonic lock for 6 months last year but it can affect any of my limbs at any time. From the dystonia in my foot, I ended up with pressure sores all over my foot trying to walk because of how unfit my wheelchair is.

Since i was about 8 i have had barriers from my education, leaving me excluded from trips, activities and even the school choir as I was told I couldn't stand long enough. Due to my complicated health problems I was out of education from the age of 11 until a few months ago.

I absolutely love attending college and have real academic and career ambitions for my future and hope to attend university in a few years. However, since returning to education I am once again met with these barriers. I am now often left unable to access large areas of my campus and even often unable to get food and drink.

I currently have a NHS prescribed Action2 provided by wheelchair services that is worsening my health. I have suffered 10+ subluxations/dislocations just this year from trying to use this chair. It is very heavy and is causing my ME/CFS to progress, fast. It doesn't give any support to my mostly fused spine causing me pain and discomfort every time I leave the house.

I can no longer walk more than a few minutes without causing a crash from my ME/CFS which puts my life at risk to this cruel neuro immune disease. ME/CFS or Myalgic Encephalomyelitis /Chronic Fatigue Syndrome is a neuro immune disease, that is extremely disabling and can be life threatening. This disease affects my every day, limiting how much I can do. It controls everything from walking to even basic personal hygiene. It is progressive, progression is triggered by exersion, and crashes which is why it's so vital for me to have a new chair.

I haven't been able to leave the house independently, see friends or simply get fresh air without support for years. I have very little independence because it is completely unsafe for me to with my current wheelchair. A right fitting, rigid wheelchair, with a rigid backrest with lateral support alongside use of a power assist will change my life. I will be able to access my college more reliably, without a worry of being able to get around safely and even attend class group study off campus. This is currently not able to happen and shouldn't have to be seen as a luxury.

I have always had issues leaving my house and enjoying time with friends due to the fact I have very little independence and am fully reliant on an adult to help me get around. As I am getting older this is getting more and more difficult. I have lots of close friends all over the country but I just cannot get anywhere to see them. This has always severely affected my mental health, and now more than ever.

I have tried out many wheelchairs, and a fair few power assists making sure I find the best fitting, and cost affective products I can. I have done significant research and attended a trial at Lifestyle & Mobility, Lowestoft. I have chosen a Rehasense Icon 60 wheelchair and a Rehasense eco assist. Having these in my life, would let me experience the last of my teenage years as normal as my body can take it, access education and live a life.

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