This discovery has in turn opened up the possibility of a cure in humans, and researchers are seeking ways to correct the effects of the gene mutations that cause the disease. At present, however, treatment is limited to supportive care: physical therapy, medications for seizures, anxiety and digestive symptoms, g-tubes for those children who cannot take in enough nourishment orally, and orthopedic interventions.

A Specialty Team of 20 Physicians Treats Rett Syndrome SymptomsDr. Djukic is optimistic that a cure for Rett Syndrome is coming; until that day, she is devoted to keeping her patients in the best possible physical ---- and intellectual---- condition. To that end, Dr. Djukic has assembled an unparalleled team of twenty specialists at Montefiore whose goals encompass not only ensuring the health of Rett patients but improving their quality of life, including the need to communicate.

The team addresses Maisy's heart murmur, seizures, breathing and swallowing difficulties, foot problems, and dental issues. "There is a comprehensive knowledge and approach to Rett Syndrome at Montefiore which is unique,' said Heather.

Future ChallengesHeather and Peter see challenges in the future with their daughter, including the prospect of 24/7 care for years to come (most Rett patients live well into adulthood). But in addition to medical resources from the team of physicians at CHAM, they now are part of a community of Rett Syndrome families organized by the Rett Syndrome Center. The group meets several times a year to learn about advances in research, to support each other, to go on family outings (such as one to the Metropolitan Museum) and to share experiences.

Passion and Compassion of Director Drives SuccessDr. Djukic has won the gratitude and enthusiastic praise of Rett parents, who say she is the driving force behind the success of the clinic.

Stefanie, a journalist from Queens and mother of 2 year old Anna, says "Sasha (Dr. Djukic) showed us that we have a daughter inside, even if Anna couldn't show us herself. She answers my calls and questions personally, and has this wonderful energy; she gives me and my daughter hugs and hope. Dr. Djukic believes in these girls like nobody else."

Heather and Peter, after searching the country for answers, found Dr. Djukic's program a "breath of fresh air!" Heather adds, "She is so positive and innovative; she got us thinking about academic goals, not just OT and PT. Maybe Maisy will not be able to walk, but now we know she can understand."

Source: The Children's Hospital at Montefiore