Help Bella with Her Rare Spinal Disease Journey

Hello Kind Souls, My name is Isabella Fernandez and I have become disabled over the past year from a Rare Spinal Disease(Syringomyelia), Severe chronic illness, and Chronic pain. This prevents me from being able to take care of myself on my own so I rely heavily on my husband for my well being and caretaking. This also unfortunately means I am unable to work. This in particular saddens me because I waited my entire life to be an esthetician and worked my tail off in highschool to graduate early so I could start my career asap. I even finished schooling for it and passed the first set of tests but my health rapidly declined resulting in finding out I have a Rare Spinal Disease called Syringomyelia that would soon unleash extreme havoc on my life.

This spinal disease is the development of a fluid-filled cyst (syrinx) within the spinal cord. Over time, the cyst can enlarge, damaging the spinal cord causing pain, stiffness, Muscle weakness and wasting (atrophy), Motor difficulties, paralysis and more. My life has been completely flipped upside down from this disease and surgery isn't an option for my particular case. After extensive discussions with a group of Neurosurgeons/Neurologists/Cerebral spinal fluid flow interpreters, it has been confirmed not optional. Living with this disease is a waiting game, waiting to know if I will lose even more function and if the pain will get even worse. It's like my own body is a ticking time bomb. On Top of Chronic Pain Syndrome, I have Central nerve damage known as Central Pain Syndrome caused by Syringomyelia. This means I'm in a heightened state of pain all the time, my body can't shut it off ever. I'm always hurting and nothing truly takes it away so I'm stuck suffering daily. Truly my entire life I've been generally unwell and unable to keep up with everyone else, but never like this. My immune system has always been so weak and I did and still do continue to constantly get sick, but I had way more physical ability. During my childhood into teen years I was diagnosed with Postural Orthostatic Tachycardia Syndrome, Dysautonomia, Neurocirculatory Asthenia (Small Heart Syndrome), Gastric Complications, and Neurocardiogenic Convulsive Syncope. Unfortunately that was only the beginning of my issues and I couldn't ignore them as easily as I had when I was younger, especially once the pain started to get worse. I've also been diagnosed with Hypermobile Ehlers Danlos Syndrome, a connective tissue disorder that causes all types of health problems in itself. I have Interstitial cystitis, TMJ, and arthritis,too as well as too many others to list them all.

Our Goal for this GoFundMe is to help with our financial struggles while waiting for disability acceptance and medical expenses since My husband is the only one who can work, and because We can't afford a caregiver to take care of me. My husband will soon not have the same leniency with his job that he does now to take care of me. I'm terrified about what that means for me and my health, so we discussed getting a service animal trained to my needs. Things like fetch medications, water, food, cardiac alert- to my heart rate spells, trained to press an emergency alert button, etc. They would also help me get around our home because I can no longer walk steadily or far, or without pain. It takes so much out of my body to do simple tasks and I'm very limited to the types of mobility aids I can use to do upper extremity weakness, wasting(atrophy), and pain. this would be a game changer for us as I'm desperate for a sense of independence and self security when home alone again. Truly anything you could contribute means the world!! It's been a very difficult journey but I'm trying to keep an optimistic outlook on life and hoping things will start to look up eventually, Thank you so much for hearing my story and considering helping! <3