Who is Elijah Davis?
He is a 26 year old history buff who frequently quotes inspirational leaders and shares historical knowledge, appreciates tribal music of various cultures, enjoys hiking and walking in nature, has a passion for archery, leather-work, and making animal pelt attire. Yes, he made rabbit pelt slippers for his wife for her birthday! Awwwww! And that is just a tiny glimpse into who Eli truly is. A few characteristics that are unmatched are his fervor and passion to 'Change the World.' Daily, you'll hear him on the phone with a vendor or internal customer at Fairview Pharmacy Services, when asked how he's doing, he'll say a quick, 'Oh, ya know, changing the world.' And he IS changing the world. But now his passions, fervor, and hobbies are becoming more arduous, painful, and increasingly debilitating. Daily activities are more labored and exhausting. Why? Fahr's Disease, a neurological disorder that currently has no cure.
His Story and Timeline
April 28th, 2017, Eli woke up with shortness of breath and chest pain. Being a young healthy individual, he and his wife were quite concerned and knew something was wrong. After a trip to Fairview Hospital, they found out he had a collapsed right lung – tension pneumothorax. Over the course of a 10 day hospital stay, his lung was not healing as it should and therefore had surgery to remove the top portion of his right lung.
-The recovery from his surgery was roughly one month to get his breathing back to par during activity and to get back on a regular sleep schedule. Unfortunately, during that time was the beginning of more leg/lower body issues. As he worked on getting his activity level back to pre-surgery status, he kept getting fatigued and having difficulty with his lower body. He kept at it, and got back into working out with his teammates in early June(one month after surgery) to see if that would promote lower body muscle growth. It did not and by early July he found out why.
Week of July 5th, 2017. He was hospitalized twice for inability to hold himself up and move his lower body. MRI’s were done of his brain and spine.
July 10th, 2017 – Received a letter stating that there were troubling results on the brain MRI, and that he needed a follow up with his primary asap. He went to his primary the week he got the letter and his primary explained that the results needed a specialist, so off to the CSC he went.
August, 2017 through present – Ongoing visits to his Fairview primary doctor, dozens of appointments with a team of MHealth CSC specialists, neurologists, geneticists, and more taking and examining x-rays, MRIs, blood tests. The genetic testing showed a mutation in Gene SLC20A2 which confirmed the presence of Primary Familial Brain Calcification (PFBC) aka Fahr’s disease aka Familial idiopathic basal ganglia calcification (FIBGC). Yeah, you know that doesn’t sound good.
Not only did the tests and exams reveal the PFBC, it also identified the following issues:
-Images of his hips found significant tears in the labrum on both hips. The surgeon consulted him on the risks of having the surgery done to repair the damaged labrum with Fahr’s being present. Follow up consult with a different surgeon pending.
-Degenerative Disc Disease, 9 discs below 50% hydration and going down, with one disc completely dehydrated and cracked in half and one disc herniated.
-The last CT showed significant bilateral, symmetrical calcium deposits in the: Basal Ganglia, Dorsal Thalami, Frontoparietal, temporal subcortical white matter, Cerebellar hemispheres
-Upcoming MD visits will be focusing on the muscle deterioration rate of his legs/hips
What is PFBC/FIBGC/Fahr’s?
It is a rare neurological disorder that is characterized by abnormal calcium deposits in the brain, basal ganglia, dentate nucleus, and thalami. There is NO CURE. First symptoms are usually fatigue, loss of motor skills, unsteady walking and movements, slow or slurred speech, dementia. Sometimes migraines and seizures. Associated symptoms include restricted movements, slow movements, postural instability, and progressive worsening of cognitive abilities. The movement and mental disorders that are attributed to diseases of the nervous system such as this worsen over time. As the condition progresses, paralysis may develop, features of Parkinson disease may include tremors and rigidity, muscle cramping, and continued deterioration of mental abilities (dementia).
Fortunately, at this time it is presenting itself with the physical Parkinson symptoms with progressive movement deterioration that is affecting the majority of his joints, with no symptoms of dementia.
Where does he go from here and why he needs your support?
Well, what would Eli Davis do? He'll keep on changing the world. He'll continue with his positive and inspiring attitude, to shoot archery, hike and take walks until his body says it's too much. That's why he and Victoria need your support. The bills for the 10 day hospital stay to remove part of his lung, the hospital visits for inability to move his lower body, continued and never-ending specialist appointments, treatments/attempts to minimize symptoms and keep them at bay, and to make home modifications that are necessary for his deteriorating physical condition are still accumulating.
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