After returning from a brief mission trip to East Asia, the Lorgs were surprised to find their precious 12-month-old daughter, Hadley, barely able to walk. Tests showed that Hadley had a rare genetic degenerative disorder of the central and peripheral nervous systems called Krabbe’s disease.

The fight of her life
Krabbe’s disease is one of a group of genetic disorders called the leukodystrophies, which impair the growth or development of the myelin sheath, the fatty covering that acts as an insulator around nerve fibers, and causes severe degeneration of mental and motor skills. This caused Hadley to have feeding diffi culties, muscle weakness and other painful symptoms. Gradually, the ability to smile, sit up and reach for objects were impaired, leaving her helpless and totally relying on her mother and father.

The power of compassionate care
With the help of a feeding tube, a new nutritional supplement and tender-loving care, Hadley is growing and thriving. Her hospice nurse, Julie Lindsay, R.N., CHPN, is there for pain and symptom management. “Julie is our gift from God, guiding us with her wisdom and finding resources for Hadley’s special needs,” Tara Lorg, Hadley’s mother, says.

A hospice team also includes the patient’s physician. In this case, that physician is John Stecklow, M.D., Hadley’s pediatrician. “I have found working with the Hospice of Oklahoma County staff to be an extremely pleasant and benefi cial experience. Obtaining hospice involvement was so much easier than I would have imagined, and the care provided for Hadley has been of the highest quality. Moreover, the obvious heartfelt compassion and genuine affection expressed toward Hadley and her family have been a Godsend in a time of medical, emotional and financial turmoil,” says Stecklow.

A focus on excellence
A grant has been awarded to Hospice of Oklahoma County, an affiliate of INTEGRIS Health, to help further develop the pediatric hospice program. Terry Gonsoulin, R.N., executive director, says, “The objective of this enhanced program is to be the preferred provider of pediatric hospice care in our service area. This includes educating and training our staff about the special physical and emotional needs of these children and their families. Children also should have a voice in their own end-of-life care. That doesn’t mean hope is lost. Rather, we give them and their parents the support and quality of life they deserve.”

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