Help Evonne Fight Rare Disease
Donation protected
Evonne recently developed an eye irritation on the inner part of the lower lid on one eye. She went to an ophthalmologist locally who thought it was perhaps a benign tumor of some kind. However, it was concerning enough that Evonne decided to travel to Johns Hopkins Hospital in Baltimore to get it further evaluated.
At Hopkins, an initial examination showed the unusual tissue was not confined to her lower eyelid, but was inside the upper lid too. The doctor’s initial suspicion was that the unusual tissue growth was caused by lymphoma. A biopsy was taken and sent off for analysis.
To make an involved story shorter, there have been more doctor exams, a scan, an MRI, and bloodwork. More will follow. The disease turned out not to be lymphoma; yet, surprisingly, that did not end up being especially good news. Evonne has an extremely rare condition known as amyloidosis. If that news wasn’t bad enough, the scans also revealed a pituitary tumor. The amyloidosis is a condition when one’s body (usually the bone marrow) produces a rogue protein (amyloid) that can deposit itself in tissues and organs of your body. Thus far, it has deposited itself in her eyelid. Like a cancer, though it is not cancer, it can deposit itself virtually anywhere in the body and wreak havoc. How the condition manifests itself depends on where the amyloid deposits occur. The condition is incurable and difficult to treat. As to the pituitary tumor, it is a “functioning” tumor which means it is causing the production of a hormone, in her case an excessive amount of human growth hormone. That’s dangerous. It must be immediately removed. Her surgery to remove that tumor is scheduled for May 20. It is but the first step in her long road to overcome, to endure, to survive these two afflictions that are attacking her health.
Evonne is a 36-year-old blue collar type of girl. Learning long ago that working indoors doesn’t suit her, she works outside with her hands. She is a boat cleaner, a good one, beloved by the clients whose boats are kept glistening by her work. However, the economics of such work has not yet allowed for a reserve medical emergency fund. The initial amounts for the diagnostic tests, the pituitary surgery, and related costs (the parts uncovered by her insurance) are more than she can bear alone.
These initial expenses, beyond her current means, are the goal of this go-fund-me effort.
If you can help at all, thank you.
[Note: The picture of Evonne that adorns the top of this page shows Evonne’s joy in the outdoors. This picture was taken by the aunt whom she accompanied on this adventurous hike, she looks like she is on top of the world. Perhaps your help will enable Evonne, at some point in the future, to have that on-top-of-the-world feeling once again. This is the hope. With successful treatment, it may happen.]
At Hopkins, an initial examination showed the unusual tissue was not confined to her lower eyelid, but was inside the upper lid too. The doctor’s initial suspicion was that the unusual tissue growth was caused by lymphoma. A biopsy was taken and sent off for analysis.
To make an involved story shorter, there have been more doctor exams, a scan, an MRI, and bloodwork. More will follow. The disease turned out not to be lymphoma; yet, surprisingly, that did not end up being especially good news. Evonne has an extremely rare condition known as amyloidosis. If that news wasn’t bad enough, the scans also revealed a pituitary tumor. The amyloidosis is a condition when one’s body (usually the bone marrow) produces a rogue protein (amyloid) that can deposit itself in tissues and organs of your body. Thus far, it has deposited itself in her eyelid. Like a cancer, though it is not cancer, it can deposit itself virtually anywhere in the body and wreak havoc. How the condition manifests itself depends on where the amyloid deposits occur. The condition is incurable and difficult to treat. As to the pituitary tumor, it is a “functioning” tumor which means it is causing the production of a hormone, in her case an excessive amount of human growth hormone. That’s dangerous. It must be immediately removed. Her surgery to remove that tumor is scheduled for May 20. It is but the first step in her long road to overcome, to endure, to survive these two afflictions that are attacking her health.
Evonne is a 36-year-old blue collar type of girl. Learning long ago that working indoors doesn’t suit her, she works outside with her hands. She is a boat cleaner, a good one, beloved by the clients whose boats are kept glistening by her work. However, the economics of such work has not yet allowed for a reserve medical emergency fund. The initial amounts for the diagnostic tests, the pituitary surgery, and related costs (the parts uncovered by her insurance) are more than she can bear alone.
These initial expenses, beyond her current means, are the goal of this go-fund-me effort.
If you can help at all, thank you.
[Note: The picture of Evonne that adorns the top of this page shows Evonne’s joy in the outdoors. This picture was taken by the aunt whom she accompanied on this adventurous hike, she looks like she is on top of the world. Perhaps your help will enable Evonne, at some point in the future, to have that on-top-of-the-world feeling once again. This is the hope. With successful treatment, it may happen.]
Fundraising team (2)
Keith Paulk
Organizer
Clearwater, FL
Shawn DeVaughn
Team member