Below is our original letter:
No one expected Jimmy to survive his birth. When Jimmy's mom, Ally, was 16 weeks pregnant, a routine blood test indicated a potential problem. Further testing confirmed that the baby had a frontal encephalocele, an opening in the skull through which his brain was protruding. At each subsequent prenatal visit, the news grew worse. The baby had a stroke, the brain damage had increased. The doctors urged Ally to have a natural delivery as the baby would not survive outside the womb, but Ally insisted on a cesarean section, knowing that her son would live. Ally had a c-section and Jimmy lived. The next day, he had a 6-hour operation to repair the encephalocele and place a shunt to drain excess fluid; however, he lost most of his right brain. Despite these and other complications, Jimmy grew and thrived in a family made complete a year later when his brother Michael was born.
Throughout his life, Jimmy has had a number of life threatening complications and he has often defied doctors’ prognoses, thanks in large part to his mother's great love and fierce determination. Jimmy has brought great joy to those of us who know him, whether it be his delight in listening to a squeaky door hinge or his hysterical laughter at a masterfully spun pot lid. Jimmy loves his family perfectly in spite of his handicaps and he has taught us a better way to love as well.
Jimmy was placed in the palliative (hospice) care program at MGH last year and has been hospitalized since May 24, experiencing unbearable pain, the cause of which the doctors aren't able to determine. His mother has been at his side, advocating for him, as she is his voice. Ally has been the sole support for this family since her divorce from the boys’ father more than 10 years ago; she recently lost her job when her family medical leave time ran out. Their mortgage is past due and the utility bills are growing larger. Any money she has goes to food, gas and parking at the hospital.
We, her family and friends, would like to help her in a bigger way than we find possible alone. We would like her to be able to spend her time with her sons without the additional worry of her finances. That is why we are holding a fundraiser at the VFW in Sharon, MA on September 25, 2010.
**Our Jimmy passed away the week before the benefit. We were unbelievably surprised by the amount of love and support shown to us by our community--by people we knew, and complete strangers.