The Eden Fund

My name is Jen and I am a single mother to Eden, who is six years old. She was diagnosed with Rett Syndrome just over three years ago. What this means for her is that after almost two years of relatively normal development, she began to have seizures, lost her voice, and completely lost the use of her hands. Nutritional and gastrointestinal issues began to present shortly after and required placement of a g-tube in late 2012. She is dependent on other people for 100% of her daily needs, and is unable to communicate her wants and desires in any sort of meaningful way. To put it bluntly, Rett seriously sucks.
 To learn more about Eden's journey, check out her page on GirlPower2Cure. 


 On a monthly basis Eden may see  gastroenterology, neurogenetics, endocrinology, orthopedics, or a nutritionist to attend to her medical needs, as well as speech pathology, physical therapy, or occupational therapy.  Illnesses are frequent and often turn into emergencies. 


But we try to live a full, good life in spite of it. We live on a wonderful farm that is safe, healthy, and beautiful. Eden has space to ride her donated bike, play with other neurotypical kids that are like family to us, and she is able to be much more independent here than anywhere else that we would possibly live. This has been our home and we don't want to have to leave, but it's becoming an inevitability unless I can make some changes.


Right now we are in crisis and we need help. I work hard, every day, to ensure that her needs are met, most days at the expense of my own. I am the sole breadwinner in our home, but find it extremely difficult to find and hold steady employment due to the intensity of Eden's needs. We receive almost no government assistance-not for a lack of trying-and have reached a point where I am no longer able to pay our bills every month. What help we have received from friends or family is simply unsustainable. 


My goal with this fundraiser is to simply buy us some time. I want to see Eden in new and better therapies to help her continue to move forward. I want to actually have the time to put some systems in place that will help me to better help her. I want to be able to beat down doors to get us what we need, and I want to have some time to find better work. I want to make her life better. I want to make MY life better. This girl is everything to me, but I can't do this on my own any longer.