A Special Tribute to Parents
Each year we assist about 1,000 families in crisis. We rarely see their faces. We only learn of their struggles through the healthcare professionals who “paint” the picture of need and ask for our help.
Once a year, however, we do meet some of these families through our treasured partnership with the Spirit of Philadelphia during our Family Fun Day Cruise. On April 11th, we were reminded of the severe situations some families live with daily as we met many parents, with their wheelchair-bound children, some on ventilators, sharing a day of respite--a gift from the Spirit and Entertainment Cruises, Inc.
The importance of a day like this was best expressed by one grateful mom who wrote
Our daughter just celebrated her second birthday. She has Costello Syndrome (extremely rare genetic disorder) and terminal cancer. . . . Her two years have been spent in hospitals, doctors’ offices, Emergency Rooms, on therapy mats and in countless waiting rooms. When we get into the car she assumes we are going to one of these places. When you have a child with profound special needs you get many stares, many questioning eyes, or worse, nothing at all. One can feel completely invisible in this life. But we felt completely accepted, welcomed and assisted on the cruise. We felt relaxed. I cannot express enough what a magical state of being that is for us.
At the Fund we are reminded daily of the overwhelming impact seriously ill children have on families through the referrals made by over 175 hospitals and medical facilities throughout Pennsylvania, New Jersey, and Delaware. Imagine the hardships a courageous single mom faces in managing the care for her 14-year-old son who suffers the debilitating effects of Huntington’s Chorea, cerebral palsy, and blindness. Neurologically devastated and ventilator dependent, this boy has required several hospitalizations this year for viral infections, pneumonia, and increased pain. The boy’s biological father died of the same disease. His stepfather suffered a tragic death a few months ago. Because increased medical costs and decreased income made it impossible for this mom to keep up with her household bills, they turned to us for help.
With Mother’s Day and Father’s Day upon us, we ask you to focus on those special parents who struggle to provide a stable home while managing the healthcare needs of their medically fragile children and their brothers and sisters as well. Whether we can provide a day of respite with our partner the Spirit of Philadelphia; assure an enjoyable holiday with our Holiday Adopt-a-Family Program; provide guidance through our Financial Management During Crisis educational program; secure furnishings, appliances, or clothing; or relieve financial burdens through our Financial Assistance Program, we can make a real difference in their lives--with your help.
Won’t you please help us to support them, to comfort them, to offer a sense of hope--“a magical state of being”--and show them that others care. We thank you so much for whatever support you can contribute by clicking Donate Now at the top of the page.
Once a year, however, we do meet some of these families through our treasured partnership with the Spirit of Philadelphia during our Family Fun Day Cruise. On April 11th, we were reminded of the severe situations some families live with daily as we met many parents, with their wheelchair-bound children, some on ventilators, sharing a day of respite--a gift from the Spirit and Entertainment Cruises, Inc.
The importance of a day like this was best expressed by one grateful mom who wrote
Our daughter just celebrated her second birthday. She has Costello Syndrome (extremely rare genetic disorder) and terminal cancer. . . . Her two years have been spent in hospitals, doctors’ offices, Emergency Rooms, on therapy mats and in countless waiting rooms. When we get into the car she assumes we are going to one of these places. When you have a child with profound special needs you get many stares, many questioning eyes, or worse, nothing at all. One can feel completely invisible in this life. But we felt completely accepted, welcomed and assisted on the cruise. We felt relaxed. I cannot express enough what a magical state of being that is for us.
At the Fund we are reminded daily of the overwhelming impact seriously ill children have on families through the referrals made by over 175 hospitals and medical facilities throughout Pennsylvania, New Jersey, and Delaware. Imagine the hardships a courageous single mom faces in managing the care for her 14-year-old son who suffers the debilitating effects of Huntington’s Chorea, cerebral palsy, and blindness. Neurologically devastated and ventilator dependent, this boy has required several hospitalizations this year for viral infections, pneumonia, and increased pain. The boy’s biological father died of the same disease. His stepfather suffered a tragic death a few months ago. Because increased medical costs and decreased income made it impossible for this mom to keep up with her household bills, they turned to us for help.
With Mother’s Day and Father’s Day upon us, we ask you to focus on those special parents who struggle to provide a stable home while managing the healthcare needs of their medically fragile children and their brothers and sisters as well. Whether we can provide a day of respite with our partner the Spirit of Philadelphia; assure an enjoyable holiday with our Holiday Adopt-a-Family Program; provide guidance through our Financial Management During Crisis educational program; secure furnishings, appliances, or clothing; or relieve financial burdens through our Financial Assistance Program, we can make a real difference in their lives--with your help.
Won’t you please help us to support them, to comfort them, to offer a sense of hope--“a magical state of being”--and show them that others care. We thank you so much for whatever support you can contribute by clicking Donate Now at the top of the page.
2010-05-09
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