Addison and Cassidy Hempel, both 5, hardly ever possess the
ability to walk, talk and eat. A rare disease they both share causes their
bodies to build up cholesterol, leading to debilitating physical and neurological
problems. The two girls must resort to wearing diapers and lost the ability to
speak months ago. There is no known cure for this disease, officially know as National
Niemann-Pick Disease but referred to by doctors as Childhood Alzheimer’s. Most
children with the disease die before their 20th birthday.
However; there may be hope in the experimental use of a drug
called cyclodextrin. Cyclodextrin, an additive in cholesterol-free foods that
studies show also might help combat the HIV virus, has not yet procured
approval from the FDA for use in the treatment of Childhood’s Alzheimer’s. The
Hempels now receive the treatment after their parents and doctor petitioned for
the FDA’s “compassionate use” program. The program allows patients with
life-threatening illness to use as-of-yet unapproved treatments if said
patients find no other medicinal options available.
Should the treatment prove successful, the Hempels may blaze
the way for cyclodextrin’s use in other children afflicted by this bizarre
disease.
Photo: Chris Hempel
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