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Achievements
Milestone - Level 5
Raised $1,000
Personal Gift
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Fundraising Honor Roll
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This coming Sunday, on April 23, our family is planning to walk to raise funds for St. Mary’s Hospital for Children in Bayside, New York, and I’m asking for your help. Even though St. Mary’s is located in New York and not the Washington area, its success is of great import to our family because our granddaughter Penny (Noa Shachar bat Avigael) has been a resident there for the past two and a half years. Our daughter is the mother of a precious little girl with Aicardi Syndrome, a very rare neurological and developmental disorder. Aicardi is a particularly cruel condition that affects just about every major system in her body -- neurological, respiratory, circulatory, digestive, muscular-skeletal, hormonal. Penny will turn six years old this week, but she remains totally dependent on others to take care of even her simplest needs.
As an Aicardi patient, Penny has experienced thousands of debilitating seizures and, prior to her move to St. Mary’s, repeated stays in intensive care because of life-threatening complications related to her medical condition. We all cried when our daughter and son-in-law made the brave, heart-wrenching decision to have Penny move to St. Mary’s, about 20 minutes from their home, but with time we are ever more convinced that it’s absolutely the best place for her to receive all the intensive medical care, physical therapy and educational services she needs every day.
In an ideal world, there wouldn’t be a need for such a hospital at all, but in the real world, the need exists and I think most of us want our beloved child at a state-of-the-art facility, as close as possible to home to ensure that familial bonds remain strong and active. Even at a top-notch hospital, you want to do everything you can to make the experience as good as it possibly can be.
Penny is on a special prescription high-fat formula that she receives via tube feeding to help decrease the frequency and severity of her seizures, as well as steroids to help her breathing, and both affect her growth. She weighs about 55 pounds, and because she cannot help you or hold her head steady, it is very difficult to turn, lift and carry her safely. (I simply can’t do it anymore.) We’re so grateful for the staff who work together to take care of her with such good grace every day! They always tell us how sweet and lovable she is, and we of course agree. They smile and coo, sing, and lovingly call her their “Pen-Pen” as they work with her. They are attuned to her norms, and when something isn’t quite right, they can take action right away to forestall more serious problems.
In addition to the numerous maintenance medications she is given and the respiratory treatments she undergoes on a daily basis, she goes regularly for aquatic therapy to a small pool right in the building, where she can experience relative weightlessness and movement as therapists and the water support her. Time on a special stander board benefits her posture, circulation and digestion. Because her school is just upstairs from her room, she doesn’t have to go outside in bad weather, which pre-St. Mary’s was a point of vulnerability to illness.
Contrary to what you might expect given the severity of conditions among the children -- walking the halls and seeing the variety of things that can go terribly wrong for these innocent children could break your heart -- St. Mary’s is a cheerful place. An exceptional staff of doctors, nurses, therapists, care assistants, social workers and special-ed teachers exhibit both a high level of skill and great compassion toward the patients and their families. They truly see the child, not just the condition!
The cost of caring for children with medically complex and life-limiting conditions is very high, and while insurance and Medicaid provide funding for “basic, adequate care,” as St. Mary's CEO Dr. Edwin Simpser put it, no one wants a beloved child to receive merely adequate care, which is where philanthropic efforts come in! Donations from corporations, foundations and individuals pay for the various life-enhancing equipment and experiences every child deserves. The hospital is also looking to add 27 new beds to serve more children. That’s why we’re hoping to raise as much money as we can through the St. Mary’s Walk.
There is a playground at the hospital with adaptive equipment; in good weather, Penny enjoys going on a glider-swing that accommodates her specialized wheelchair. One piece of therapeutic equipment that Penny really loves is a large mobile sensory machine that combines music and light, color-changing bubble tubes, mirrors and strings of gentle color-changing lights that she can hold on to and feel moving through her fingers. I have been with her when it has been brought to her bedside and I find it transfixing, too! Every child has his/her own television/video monitor, and one day a few weeks ago, when my daughter came from work, she saw that one of the staff had thoughtfully put on a video with Passover music for Penny. These are only a few of the “extras” that make St. Mary’s special.
St. Mary’s cares not just for the children, but for their families as well. Families are always welcome at the hospital; parents can come 24 hours a day. The staff have come to know my daughter, son-in-law and Penny’s younger brother well. (When he gets a little older, there is a special group just for siblings of patients he can attend.) I try to visit every few weeks, and am always greeted with respect and warmth; other extended family and “almost- family” members who live in New York are even more frequent visitors.
Although our connection is primarily to the in-patient aspect of St. Mary’s, the organization is unique in the array of services, including daycare and homecare components, community programs, medical day camps and a unique feeding program to help children learn (or relearn) to eat. St. Mary’s Healthcare System for Children serves 2500 children daily!
At the Walk for St. Mary’s Kids, supporters will stroll through a lovely nearby park, often pushing their children in their wheelchairs (sometimes attached to essential specialized equipment). The only prize is knowing you’ve raised as much money as you can to help this non-sectarian, not-for-profit organization continue to provide essential services to special needs children. St. Mary’s is small enough to keep sight of every individual and large enough to have a facility and services that are state of the art. As Dr. Simpser told me, in comparison to many fund-raising groups, “A dollar goes a lot further here.”
This year the walk is earlier in the year than it had been, and I am terribly late in updating my personal page. Nevertheless, I would definitely appreciate your encouragement in this endeavor, and if you think it appropriate, financial support at whatever level you’re able to provide. Don’t worry about the deadline of the walk; donations will be welcome before and after Sunday. Please designate that you’re supporting Debbie Cymrot and Team Penny, so that I will be notified and can thank you personally. (The only possible reason you would not hear back from me is that you didn’t go to my personal page or mark a check, and a donation went right into the general fund. That’s still great for St. Mary’s kids, but I would hate to miss out on expressing my appreciation to you.) You can make donations online, by check to Saint Mary’s Healthcare System for Children (mailed to St. Mary’s Hospital for Children, 29-01 216th Street, Bayside, NY 11360), or by phone (718-281-8890).
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