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Please help Shannen and her mother by either making a donation or sharing this through your social media contacts. Shannen is 29 years old and lives in Stillwater, NJ with her mother Ellen. Shannen is a caring and wonderful young lady who was born with Agenesis of the Corpus Callosum (ACC). ACC is a rare disorder that is present at birth and is characterized by a partial or complete absence of an area of the brain that connects the two cerebral hemispheres. Simply put, Shannen's brain did not fuse properly at birth and because of that, her fine and large motor skills were not able to develop properly.
Shannen has multiple mental and physical disabilities and over the past 4 years, her disabilities have gotten progressively worse. Due to the onset of Dystonia, Shannen is no longer able to stand, walk, or use her hands. Dystonia is a neurological movement disorder which causes the loss of precise muscle control and continuous unintentional movement resulting in painful cramping and abnormal positioning that makes continued use of the affected body parts impossible. Shannen can hardly move her arms and legs and the dystonia has even caused her hands to be clenched shut and her ankles to be so stiff that she can barely wiggle her feet. She is currently in the process of having a series of surgeries performed that involve cutting tendons in both of her arms in an effort to allow her hands to stay open and no longer be permanently clenched. In addition to the surgeries on her tendons, Shannen may also need to have her knuckles fused so that the effects of the dystonia will not cause her fingers to clench and dig into her palms again. Her doctors have stated that the procedures may not relieve the pain in Shannen's hands but if the surgeries are successful, her fingers will no longer be digging into the palms of her hands and creating wounds, which will reduce the possibility of hygienic issues associated with bacteria getting into the wounds.
If these surgeries are not successful, Shannen may have to have her hands amputated. Due to Shannen not having the use of her hands and feet, she requires the full time assistance of someone else in order to perform any activities of daily living (ADLs), including transferring into and out of bed, eating, bathing, toileting, dressing, and even tasks as simple as brushing her teeth. In short, Shannen has no choice but to rely on other people to do everything for her.
The person that Shannen relies on the most is her mother Ellen, who is Shannen's primary care giver. For the first 27 years of Shannen’s life, Ellen and her beloved husband, Gary, were able to care for Shannen, until Gary passed away in July 2013, from complications while battling cancer. With a relentless attitude and dedicated passion, Ellen had no choice but to power herself forward and continue to care for Shannen to the best of her abilities. Being Shannen’s sole caregiver is a 24 hour / 7 day a week job and has put Ellen in a tough financial situation due to not having any free time to work. At this point, any savings that Ellen had accumulated, are almost completely depleted.
The daily task of caring for Shannen becomes more physically, emotionally, and mentally demanding as Ellen ages and Shannen’s disabilities become worse. Because Shannen lives in the rural area of Stillwater, NJ, it has been extremely difficult to find qualified aides who are willing to travel or commit to Shannen’s care. Getting Shannen to her doctor visits has also proven to be increasingly difficult with most of them located an hour or more away. The goal is to raise enough money through various fund raising efforts to purchase a more suitable handicapped accessible van, and either make improvements to their existing home or, ideally, move Shannen and Ellen to a different home that is retrofitted with all of the necessary handicapped provisions in order to significantly improve their quality of life. Moving them to a more centrally located home would help tremendously with getting steady aide help for Shannen's physical needs as well as for Shannen being located closer to her doctors.
Before Shannen’s disabilities became progressively worse over the past 4 years, she was very active and was able to work and volunteer in the community. She loved dancing, bowling, fishing, swimming, and hanging out with her family and friends. Shannen may never be able to physically do the activities that she loves again, but she is in good spirits. It is her family’s goal to create a favorable situation for both Shannen and Ellen to be able to live their lives to their fullest potential, and remain living independently for as long as possible with the help of family and friends.
*** Please note, all proceeds will be held by the Shannen Steffens LIVIN Foundation which is incorporated and registered in the State of NJ as a non-profit charity, it is not recognized by the IRS as 501(c)(3) compliant for tax exemption. This classification is to ensure that all of the monies raised go directly for Shannen's benefit, whereas compliance to 501(c)(3) requires that monies raised cannot be distributed to a particular individual person or family.
*** Shannen in 2007, sanding a dresser drawer while helping her father, Gary with a woodworking project.
*** Shannen in 2007, holding her newborn niece, Clara.
*** Shannen at a recent family gathering with her nieces, Clara, Laney, and Gabrielle.
*** Click here to read about Agenesis of the Corpus Callosum, ACC
*** Click her to read about Dystonia
Shannen has multiple mental and physical disabilities and over the past 4 years, her disabilities have gotten progressively worse. Due to the onset of Dystonia, Shannen is no longer able to stand, walk, or use her hands. Dystonia is a neurological movement disorder which causes the loss of precise muscle control and continuous unintentional movement resulting in painful cramping and abnormal positioning that makes continued use of the affected body parts impossible. Shannen can hardly move her arms and legs and the dystonia has even caused her hands to be clenched shut and her ankles to be so stiff that she can barely wiggle her feet. She is currently in the process of having a series of surgeries performed that involve cutting tendons in both of her arms in an effort to allow her hands to stay open and no longer be permanently clenched. In addition to the surgeries on her tendons, Shannen may also need to have her knuckles fused so that the effects of the dystonia will not cause her fingers to clench and dig into her palms again. Her doctors have stated that the procedures may not relieve the pain in Shannen's hands but if the surgeries are successful, her fingers will no longer be digging into the palms of her hands and creating wounds, which will reduce the possibility of hygienic issues associated with bacteria getting into the wounds.
If these surgeries are not successful, Shannen may have to have her hands amputated. Due to Shannen not having the use of her hands and feet, she requires the full time assistance of someone else in order to perform any activities of daily living (ADLs), including transferring into and out of bed, eating, bathing, toileting, dressing, and even tasks as simple as brushing her teeth. In short, Shannen has no choice but to rely on other people to do everything for her.
The person that Shannen relies on the most is her mother Ellen, who is Shannen's primary care giver. For the first 27 years of Shannen’s life, Ellen and her beloved husband, Gary, were able to care for Shannen, until Gary passed away in July 2013, from complications while battling cancer. With a relentless attitude and dedicated passion, Ellen had no choice but to power herself forward and continue to care for Shannen to the best of her abilities. Being Shannen’s sole caregiver is a 24 hour / 7 day a week job and has put Ellen in a tough financial situation due to not having any free time to work. At this point, any savings that Ellen had accumulated, are almost completely depleted.
The daily task of caring for Shannen becomes more physically, emotionally, and mentally demanding as Ellen ages and Shannen’s disabilities become worse. Because Shannen lives in the rural area of Stillwater, NJ, it has been extremely difficult to find qualified aides who are willing to travel or commit to Shannen’s care. Getting Shannen to her doctor visits has also proven to be increasingly difficult with most of them located an hour or more away. The goal is to raise enough money through various fund raising efforts to purchase a more suitable handicapped accessible van, and either make improvements to their existing home or, ideally, move Shannen and Ellen to a different home that is retrofitted with all of the necessary handicapped provisions in order to significantly improve their quality of life. Moving them to a more centrally located home would help tremendously with getting steady aide help for Shannen's physical needs as well as for Shannen being located closer to her doctors.
Before Shannen’s disabilities became progressively worse over the past 4 years, she was very active and was able to work and volunteer in the community. She loved dancing, bowling, fishing, swimming, and hanging out with her family and friends. Shannen may never be able to physically do the activities that she loves again, but she is in good spirits. It is her family’s goal to create a favorable situation for both Shannen and Ellen to be able to live their lives to their fullest potential, and remain living independently for as long as possible with the help of family and friends.
*** Please note, all proceeds will be held by the Shannen Steffens LIVIN Foundation which is incorporated and registered in the State of NJ as a non-profit charity, it is not recognized by the IRS as 501(c)(3) compliant for tax exemption. This classification is to ensure that all of the monies raised go directly for Shannen's benefit, whereas compliance to 501(c)(3) requires that monies raised cannot be distributed to a particular individual person or family.
*** Shannen in 2007, sanding a dresser drawer while helping her father, Gary with a woodworking project.
*** Shannen in 2007, holding her newborn niece, Clara.
*** Shannen at a recent family gathering with her nieces, Clara, Laney, and Gabrielle.
*** Click here to read about Agenesis of the Corpus Callosum, ACC
*** Click her to read about Dystonia