Amy O’Neill was born with a rare and progressive skin disease called Epidermolysis Bullosa (EB).  Because of this genetic disease,  Amy’s skin layers do not bond and the slightest pressure causes painful blisters and bleeding.   The skin on her legs is so fragile that it has to be covered constantly with special salve and bandages.   Every night, she spends two and a half hours changing the dressings that cover her legs. The skin on her hands and fingers has fused, forming a fist. She has endured repeated operations just to keep her thumbs separate from her hands so she can pick things up, write, drive, and feed and care for herself.   

     Ten years ago Amy’s disease became cancerous.  Since that time, malignant tumors have been continuously growing on her body. These tumors have to be removed surgically because she cannot tolerate radiation or chemotherapy.  Amy has had more than 150 surgeries in her lifetime, including more than 50 to remove cancerous tumors.  The cancer has grown so close to the bone that she is now faced with the decision to amputate her leg to slow down the spread of the cancer.  An amputation would put her in a wheelchair and mean that she would have to move to a handicap-accessible facility. 

    Many of the medical supplies Amy needs (gauze, ace bandages, special salves, etc.) are not covered by any type of insurance.  This amounts to several hundred dollars each month.  These expenses, as well as many other basic living expenses, are paid for using donations to the Amy O'Neill Fund.  The special accommodations Amy will need if her leg is amputated will increase her monthly expenses significantly. 

   Your generous donations to the Amy O'Neill fund will be used to offset these expenses.  The Fund is run by volunteers so there is no overhead; 100% of all donations are used to help Amy.

   To donate, please click here.  Your continued donations to the Amy O'Neill Fund are very much appreciated.  Thank you for your generosity!

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Health Update

Please click here for updated information on Amy, including the surgery she had in early April and the upcoming issues she faces.

Video about Amy

One of Amy’s goals is to utilize her life experience to help increase awareness and understanding of Recessive Dystrophic Epidermolysis Bullosa (EB). To accomplish this, she asked her good friend Jack Gambardella capture various aspects of her life on tape with the ultimate goal of producing a video that can be used to educate the public. This video is a work in progress… click here to see a segment in which Amy describes the devastating effects of EB in her own words.

Help support Amy by purchasing a cookbook!

We are selling a cookbook to raise money for Amy. The cookbook features Amy’s original artwork on the cover and contains 350 recipes from her friends and supporters, as well as several local restaurants. It sells for $15, with 100% of the proceeds going to the Amy O'Neill Fund.  Click here to order.