Specialist electric wheelchair for Neisha

Hi, my name is Neisha, and I'm fundraising for an electric wheelchair that will cater to my complex disabilities and allow me to have freedom to see friends and family again.

I have Elhers Danlos Syndrome which is a connective tissue disorder, and causes dislocations, ligaments and skin being too stretchy, heart and vascular problems, along with comorbidities such as craniocervical instability (neck instability which causes the spinal chord to be pinched by vertebrae), mast cell activation syndrome (my body produces too much histamine, meaning I become allergic to random things, and I'm at a high risk of anaphylaxis at any time), Postural orthostatic tachycardia syndrome (if I sit up too quickly, it causes my heart rate to shoot up to nearly 200bpm, and my blood pressure to drop. This causes fainting episodes) , gastrointestinal disorders (such as gastroparesis which is literally a paralysed stomach, bowel dismortillity and swallowing problems), I also have a surgical catheter placed as I have Fowlers syndrome (this means my renal system such as my bladder, urethra and kidneys to spasm constantly and means I am always in retention and require a catheter to stop any kidney damage but now have a pre-septic infection in my kidneys that could flair up at any time), and much more.

In November 2023 I was taken into hospital because I was having a huge seizure. These were brought on by an ongoing infection, and I was having up to 20 a day. These, along with the neck instability, caused muscle weakness throughout my whole body and partially paralysed, and left me completely bedbound. I am now diagnosed as an incomplete quadriplegic due to the amount of damage to my neck. And it has also caused my airways and oesophagus to have muscle weakness and partially collapse.

The wait time for a wheelchair on the NHS is 12-36 months, and I am required to pay nearly £2,000 towards the chair if I want the adaptations I need, but it still won't be fully adapted to my complex needs.

I'm fundraising to be able to privately purchase an electric wheelchair that comes with all the adaptations I need to mitigate my disability, along with new technology to help me with day to day life. These include a rise and fall seat so I can be at eye level to people, digital control set that allows me to control the chair with mine or my mum's phone, all terrain wheels with independent suspension which will allow me to go on grass, up and down pavements, leave my road (which is unadopted/extremely bumpy), and not cause any jolting to my neck and limbs or risk of the chair tipping. It is an indoor and outdoor chair, meaning it has a very small turning radius, and will allow me freedom to move around my house, shops, and vehicles easily.

This wheelchair has a start price of £8,950, but due to needing additional adaptations, I am hoping to raise £16,000 to cover the full cost of the complex adaptations I need.

I've been bedbound for 8 months now, and virtually housebound for over 2 years due to my mum also being disabled, and me struggling to push a manual wheelchair independently in the past, meaning I've had to rely on my fiance and friends if I ever wanted to go out. It has taken a big toll on my mental health, and the only time I can leave my room now is via a stretcher and ambulance for hospital appointments or A&E trips. But this chair will give me the freedom to experience a normal life again.

I never thought I'd have to ask for help from people like this, but being 21 and having my whole life put on hold due to NHS wait times has put me in a difficult position. I am engaged, but can't plan a wedding, I want to start a family, do evening college courses, be able to go to meetings and appointments without needing an ambulance or laying in uncomfortable stretchers.

I appreciate every penny people donate, and thank you all in advance for helping me reach this goal and for giving me my life back.