Memorial Honoring Amy
We are gratefully accepting donations for a memorial in Amy's honor at Connecticut Hospice and also for a donation to Hospice in Amy's memory.
If you would like to donate, please send a check to:
Amy O'Neill Memorial Fund
875 Wolf Hill Road
Cheshire, CT 06410
Heaven received an angel with the passing of Amy Margaret O’Neill on July 24, 2011. Born to Donald O’Neill of Shelton and the late Jeanette O’Neill in Bridgeport on Aug. 11, 1957, Amy lived in Hamden. She graduated from Lauralton Hall in 1976. In 1998 the school gave her the Claven Award, recognizing her outstanding life. She graduated from Briarwood College in 1980 with an associate’s degree then had a career at area hospitals, until illness prevented her from working. She was a self-taught artist whose favorite subject was flowers because they’re “so full of life.” She enjoyed needlepoint, yoga, watching the ocean and the simple things, like a beautiful day, a great piece of New York cheesecake and spending time with her faithful feline companion, Paula. She had a sweet smile, an engaging laugh and always wore pearl earrings. She was born with recessive epidermolysis bullosa, a rare skin disease, and was one of the world’s longest-living survivors. In her 40s, the EB began producing cancerous tumors, yet she never lost her zeal for life and her upbeat attitude. Amy was pure of soul and heart. She was inspirational, brave and courageous. She brought out the best in people, and cared deeply for them. Many people and organizations came to her aid, for which she was truly grateful. Amy is survived by her special friend Jack Gambardella and his family who meant so much to her; her precious cat Paula, and a host of friends who loved Amy and were very important to her. She appreciated the countless people whose support made it possible for her to live independently. She was always amazed and overwhelmed by the “kindness of her community”. She is also survived by brothers Timothy of Georgia and Geoffrey of Ansonia and their families. Special thanks to Dr. Stephan Ariyan and the compassionate caregivers at Yale-New Haven Hospital, Smilow Cancer Hospital and Connecticut Hospice. The angels at Hospice comforted her as she left this Earth on butterfly wings.
Message from Jack Gambardella
For those of us very close to Amy the outpouring of condolences was so great... you all really carried us through some very difficult days, and we're very grateful.
July 2011 Update:
In mid-June Amy underwent a second surgery to further amputate her right leg and the large cancerous tumors aggressively growing on it. The tumors were so aggressive that going into the procedure Amy's surgeon was not sure if they could get all of the cancer with this amputation. As it turns out they were not able to remove all of the tumors surgically.
Despite a great effort, Amy's medical team was unable to find an alternative means to remove or even slow the growth of the tumor that remains. She doesn't have that constitution to endure chemotherapy and all forms of radiation they've explored were just not safe enough for them to recommend. Ultimately the decision to pursue any treatment is Amy's. She takes great stock in her medical team's opinion and so she's decided to stop all treatments and allow nature to take its course.
While at home Amy will receive Hospice Home Care, however as time moves on (and it may be sooner than later) Amy will need additional home care supports that won't be covered by insurance. We are gratefully accepting donations to help offset these additional costs.
Please keep Amy in your thoughts and prayers. Amy loves connecting with people, and is comforted by knowing that people care about her. Cards and notes of support and encouragement can be sent to Amy at P.O. Box 345, Cheshire, CT 06410-0345
June 2011 Update:
On June 16 Amy underwent a second surgery to further amputate her right leg. She is currently recuperating at the Smilow Cancer Center, anxious to move home to her new apartment.
At the end of April Amy signed a lease for a handicap-accessible apartment in a wonderful complex in Hamden. In mid-May Amy was moved into her new home and was feeling really good about her immediate future. Sadly, as the move was completed Amy began to see tumors growing back on the knee of the amputated leg. By the end of May Amy was again confronted with the almost immediate need to either have more of her right leg amputated or to allow nature takes its course. Amy made the same choice she always has... to fight for her life. Surgery was scheduled for June 16.
As the days passed en route to the surgery the tumors continued to grow with what Amy describes as an angry, mean aggression…so aggressive that going into the procedure Amy's surgeon was not sure if they could get all of the cancer with the amputation. As it turns out they were not able to get it all, so now alternatives are being explored. Unfortunately, due to the EB, Amy has never been a candidate for chemotherapy or radiation, however for this isolated incident a form of radiation may be considered.
Amy's medical team is still trying to determine what, if any, the appropriate options may be. In the meantime, please keep Amy in your thoughts and prayers. Amy loves connecting with people, and is comforted by knowing that people care about her. Cards and notes of support and encouragement can be sent to Amy at P.O. Box 345, Cheshire, CT 06410-0345.
March 2011 Update:
In December, Amy had surgery to amputate her right leg. Although she managed to avoid this for several years, there was a large tumor on her right foot that involved the bone and the only way to prevent the cancer from spreading throughout her body was to amputate her leg.
After recuperating for several weeks in the hospital and then spending a month in rehab Amy returned home to her apartment. She has an artifical leg, but is only able to use it for an hour or two each day (at best) so she is confined to a wheelchair for most of the day. Because Amy's apartment is not handicap accessible, completing tasks that should be simple, like getting into the bathroom, are extremely difficult and physically exhausting. She is also unable to leave her apartment because it is impossible to navigate the stairs. We are actively looking for a handicap-accessible apartment but they are very difficult to find. In the meantime, Amy is coping, with assistance from Hospice, home health care aides, and friends, and despite the incredible difficulties she faces on a daily basis still manages to smile.
Our current goal is to get Amy into a handicap accessible apartment as soon as possible, and also to get a motorized wheelchair for her. Please contact firstname.lastname@example.org if you can help in any way, or click here if you would like to make a donation. Please keep Amy in your thoughts and prayers.
Purchase a CD or cookbook!
Our initial goal in selling the cookbook and CDs was to raise money to help offset Amy's living expenses. All proceeds will now go to the Amy O'Neill Memorial Fund.
The CD, titled "Not Before My Time" is a very special selection of music composed and performed by talented local musicians. The CD was the vision of Reverend David Kelsey and Brad Jacobs, who designed, developed and produced it together. The CD sells for $15, and all proceeds go to the Amy O'Neill Memorial Fund. Click here for more information and an order form.
The cookbook--"Amy's Kitchen"-- 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 Memorial Fund. Click here to order a cookbook.
New Haven Register Article about Amy
Please click here to view an article about Amy that was published in the New Haven Register and a video that was published on their website. Many thanks to Ann DeMatteo for helping spread the word about Amy.
Amy on NBC Evening News
Please click here to view a story about Amy that was featured on the NBC Connecticut evening news.
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.
Previous Health Updates
Please click here for updated information on Amy, including the surgery she had in early April and the upcoming issues she faces.