Roll on, Eden
Eden on Kahlua, with handlers and therapist Mary Elizabeth.
When most of us hear the scientific name of a child’s disease, we may be little more than curious. Sometimes, when it’s a term we don’t understand, we may even Google the word. It is when a disabling disease might affect someone in our family that we realize the suffering caused by such a label.
When Jacob’s Fund learned about Eden we were told he had hydrocephalus. My mind conjured up the well-known phrase, “Water on the brain.”
Eden is an eleven-year-old loving, smiling boy. And hydrocephalus, his diagnosis, presents many challenges each day for him. While a shunt inserted inside his skull prevents the fluid buildup and enlarged head characteristic of hydrocephalus, he suffers seizures and has had significant dental surgery. He has difficulty swallowing and is significantly developmental delayed.
He requires Physical, Occupational, and Speech Therapy. He began hippotherapy more than a year ago. At the start he needed two boppies (large round pillows that look like oversized neck pillows) to support him. Since then, he’s grown stronger and gained more control of his trunk; now he’s down to one boppy and sometimes none. Eden’s wheelchair, which he can roll in all directions, provides some independent mobility, and he uses a personal gait trainer at home.
Eden in his wheelchair, with Mom looking on.
Eden loves to ride his horse, Kahlua, and smiles all through his hippotherapy sessions. As a result, he’s trying to talk, calling Kahlua by name and telling him to “go.”
Eden’s mom found McKenna Farms after friends told her about the outstanding therapy programs there, and through McKenna Farms, we found Eden. We delight in each of his smiles and revel in each milestone he reaches.
Your generosity makes it possible for Jacob’s Fund to help Eden grow in strength and ability. We thank you. Your gifts to Jacob’s Fund are tax deductible and can be sent to:
Jacob’s Fund1630 Tipperary Drive
One consistent thread runs through the lives of families of the special-needs children Jacob’s Fund benefits. Though they rarely talk about it or complain, their lives are complicated and sometimes incredibly difficult.
 Parents of children with hydrocephalus constantly worry about continued shunt function. With every malfunction there is a need for surgery and the perceived threat of brain damage. This constant worry and the daily responsibilities and stress of caring for a child who may have multiple medical problems are very difficult for families. Financial strain caused by numerous medical visits or surgical procedures may deplete a family’s financial reserve, and private insurance may not be obtainable unless it is offered through a large group employment policy. Concerns about the child’s ability to be self-supporting and independent in the future are also an issue for parents as the child grows into adolescence. Coordination and communication between specialists, practitioners, family and school personnel can oftenbecome complex and overwhelming to parents.
(This Fact Sheet was produced by the Hydrocephalus Association, copyright © 2012. It was adapted from an article in the Journal of Pediatric Health Care written by Patricia Ludder Jackson, MS, RN, PNP, Program Coordinator of the Nursing Leadership in Pediatric Primary and Chronic Care Program at the University of California, San Francisco.)
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