Most people take care not to be exposed too long to the sun. People with xeroderma pigmentosum (XP) can't be exposed to sunlight at all because, due to a genetic disorder, ultraviolet (UV) light damages their skin and eyes.

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During the summer I work as a nurse in one of the city's summer school programs for children with special needs, so I am used to children arriving at school with medical equipment. However, yesterday a summer schooler came with an unusual piece of equipment--his own AED (automated external defibrillator). An AED is used in an emergency to change an abnormal, life-threatening heart rhythm into a normal rhythm using an electric shock.

I learned that the child has Timothy syndrome, a genetic disorder that can cause potentially fatal heart rhythm disturbances. The syndrome also includes heart defects; this child had a VSD (ventricular septal defect) and a patent ductus arteriosus (PDA), both of which have been repaired.

The child's IEP (Individualized Education Plan) requires that the school staff who work with him be trained in CPR and in how to use the AED. He also has a monitor who rides on the school bus with him who has this training as well. I hope we'll never need to use the training, but if so, we are prepared.

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On July 6, 2009, Actelion Ltd announced that the pediatric dispersible formulation of Tracleer (bosentan) for the treatment of pulmonary arterial hypertension (PAH) in children has been approved in the European Union. Actelion stated that this approval makes Tracleer the only PAH therapy with an approved formulation for treating children from two years of age. In the Actelion press release, Isaac Kobrin, M.D., Head of Clinical Development at Actelion stated, "Having the approval of Tracleer, with an accurate dosing in a child-friendly form, is an important advancement in the treatment of PAH in children. After receiving approval in the EU, we will continue our regulatory filings in other countries to ensure that children can benefit from this pediatric formulation of Tracleer on a worldwide basis."

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About 1 in 5,000 infants in the United States is born with gastroschisis, a birth defect in which an infant is born with some or all of his/her intestines on the outside of the abdomen.

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