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This fundraiser ended on 10/13/12

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My Service Dog and I would greatly appreciate your assistance getting a hi-tech form of locomotion and further diagnostic testing.

At birth my skeletal structure was different. I had a congenital deformity of the anterior wall of my chest called pectus excvadum; which means that my sternum and ribs are sunken in. This can manifest in breathing problems and displace ones heart. My wonderful mother expressed concern, but the doctors brushed it off as “nothing.” And said I’d, “…likely grow out of it.”

But I didn't. During school I was quiet, got glasses in 3rd grade, covered my ears at sharp noises, and was put in Special Education Classes for the developmentally delayed. I despised running, feared needles, and sitting cross-legged on the floor. My mother let me use the fancy typewriter—with spellcheck—since writing a whole notebook page with a pencil was painful. Plus spelling came anything but natural to me. Dyslexia still frustrates me to this day, and my skeletal abnormalities only created further problems.

In middle school I “randomly and without reason” would hurt things—mostly ankles or wrists. Chronic pain and acute swelling joined the mix, along with stomach issues. Around that time an eating disorder called, Bulimia was in the spotlight. Thus the school counselor accused me of throwing up my food--on purpose--because I wanted to be beautiful. It wasn’t the cause of my dietary issues, though what was remained a mystery for many more years. Eventually I was diagnosed with Celiac Disease, and Casein intolerance. Both are autoimmune diseases where my body inappropriately responds and attacks itself if I ingest Gluten or Casein proteins. Even the smallest exposure causes drastic damage to my internal organs.

In the misted of high school, I began randomly fainting. At that time it was blamed on low blood sugar levels—for lack of any better explanation. At age 17 I dislocated both my shoulders for no apparent reason. A few experts later; noting was concluded or understood. Gingerly I ambled along for several more years until two scary incidents happened. But at the age of 22 nothing seemed to add up yet…

There is a medical phrase that says, “When you hear hoof beats, think horses, not zebras.”

But, my hoof beats are that of a zebra. Not a horse.

A medical zebra is a person with a rare medical condition.

Finally in the winter of 2008 I caught up with myself; waking up numb from the shoulders down and my pillow soaked in blood. My border collie leaped on the bed and began licking my arms and laid her body across my chest. Slowly feeling came back. But it seriously freaked me out. A few days later my right hip dislocated, and pops out rather frequently (still) making it painful to walk.

So over the last few years I’ve attempted to unravel the root cause. X-rays confirmed phase-two spinal degeneration, severe pelvic tilt, and scoliosis. Careful diet changes combine with an armful of daily supplements control a lot of the acute chronic swelling. Several week-long painful sections of physical therapy later, dozens of blood tests, along with a “strange” electrocardiogram and “relatively-normal” MRI of my brain concluded an educated guess of a connective tissue disease called Marfan syndrome. (Funny enough one of the initial physical signs of this Syndrome is the sunken chest that I was born with.)

Connective tissue disease effects all aspects of my being; creating chronic pain, loss of mobility and possible heart problems. However in order to confirm the type of connective tissue disease, I need two additional MRI’s and genetic blood testing. Sadly, until Medical Insurance Laws change in the USA, I’m deemed “Not sick enough.” to quality for financial assistance with diagnostic testing, mobility aids or medication/supplements.

All proceeds from this fundraiser will go directly towards additional testing and mobility aids to keep me as active and healthy as possible. Thanks in advance. Your help is greatly appreciated!

Sincerely,
Lindsey & Trinity (my Service Dog)
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