Support for Daughter's Rare Disease Battle

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$3,015 raised of 8K

Support for Daughter's Rare Disease Battle

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I would like to raise funds to help support my daughter Ashley Coleman during her difficult medical journey.

Since October 2023 she has been suffering from a number of debilitating symptoms including severe chronic neck pain and fatigue, dizziness, sinus tachycardia, trouble swallowing, headaches, and episodes that mimic stroke like symptoms. After several trips and stays in the ER and no clear diagnosis she was able to research a specialist online that she thought could help.

The specialist reviewed her symptoms and imaging and determined she has a rare disease called Vascular Eagles Syndrome also known as Venous Outflow Obstruction. This means she has a calcified ligament in her neck that is compressing her jugular vein to the point that it is completely closed off and ultimately the only cure is surgery.

Unfortunately the specialist she is seeing is located in NY meaning her insurance has not covered any of the appointments or travel expenses.

Each appointment costs about $1300 out of pocket and that is not including the cost of travel and hotel.

There are no doctors that treat this disease in RI so this is her only option.

She will also be having surgery in NY and will be there for an extended time for recovery.

Therefore, this journey has been putting a financial burden on her and her family and it is not yet over, so please consider helping during these difficult times. We are forever grateful for any amount of help. Thanks!

If you would like to donate by Venmo instead please send donations to @Ashley-Coleman-08815

Here is an image showing her Eagle Syndrome- The right side of the image shows where the bone is growing abnormally long and causing all the issues. The left side of the image shows a fairly normal length in comparison.

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Organizer and beneficiary

Lisa Coleman
Organizer
North Providence, RI
Ashley Coleman
Beneficiary
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