Help Naomi gain freedom again

Hi there, my name is Naomi. I’m 18 years old and had once dreamt of all the cliche things, from being a vet to being a movie star and then to being an artist. Now I dream about being able to leave my bed without hurting, to leave my room and join my family and to be able to once again say yes to doing the simplest things with friends, that I’d never thought about beforehand.

I’m rather goofy and kind, making people smile is my goal, even when I personally don’t feel like smiling.

My health had never been steady, with severe childhood eczema, constant migraines, fainting, anxiety and alopecia from age 2-12, but that changed one Summer.

In July of 2020, I was on a bike-ride with a friend. Out of nowhere, I couldn’t breath, and had fallen from my bike into the grass, scared as to what was happening. I was lucky enough that a doctor had been walking nearby and that a maintenance worker saw my struggle and called for medical help.

The only thing that stopped that bike ride from being my last thing to ever do, was an out of date epipen I’d carried with me after a possible peanut allergy query.

From that point, things only got far worse. What had originally been thought to be an allergy, something I could avoid, turned into a spiral of hospital admissions, epipen stabs and a decline in my health. A common part of the anaphylaxis includes what I often joke about as the Kardashian lips, unfortunately though, it’s hardly a laughing matter when I’m turning pale and losing air.

Through Derriford hospital, I was diagnosed with Mast Cell Activation Syndrome, a disease that can cause many symptoms, one being spontaneous anaphylaxis over the simplest things. Weather change, Stress, Pain, Medication, Foods, you name it. I’m the first in my area to be known to have this, so it’s a fight to do the things I took for granted. Withdrawing from college, losing friends who couldn’t handle my health and being bound by my own body to my bedroom have become harsh realities for me.

Mast Cell is a sister disease with others such as Ehlers Danlos Syndrome(EDS), Postural Orthostatic Tachycardia Syndrome(POTS), both of which I am suspected to have.

Because of all this, I experience severe pain and a simple thing like rolling over in bed can cause a joint to dislocate. In addition, I experience scary sudo-seizures caused by stress, in turn dislocating and wearing myself out completely.

Over a year later, I’ve been admitted to hospital over 40 times in that space, let alone countless at home treatments and illnesses. That’s almost 3 anaphylactic reactions every month for the past year of my life.

With my condition developing, my legs no longer do what they should, which is walk without crumbling. Wheels have become my only way to regain any semblance of life.

Family means the world to me, I have the everlasting support of them behind me to encourage me when times get tough. Not being able to ease their worry, or spend a girls day out with any of them is heartbreaking. My sister and I used to always say we’d do all sorts of wonderful things together, and I want to fulfill that even now.

This plea is not only for me, but for my family. My mother Nicola is a true hero, staying by my side during each hospital admission and each new trial. Transporting and setting up my ridiculously big and impractical wheelchair wherever and whenever, despite her own problems and pain.

Meanwhile my step-dad frets silently, joking and urging a smile from me when I almost believe I’ve got none to give. To be able to reduce the stress on my family, I need help with getting my independence.

Wheelchairs are no easy thing to buy, they can be bulky and cause a lot of stress, which for me causes yet another trip to hospital. But if you helped, I could have a wheelchair that doesn’t deny me the space to be indepent, a wheelchair that means I don’t have to worry about my toes or fingers dislocating when I can’t manouvre like I should.

I went from wanting to be an artist, to just wanting to join my family on a weekly shopping trip. Can you help?