Palisadians Co-Host Gala to Find Cure for Rett Syndrome

By JACQUELINE PRIMO | Reporter

Seven years ago, Hannah Epstein was a healthy, happy and bright toddler. She was speaking by age two-and-a-half—with perfect pronunciation, mind you—and trying to keep up with big sister Jennifer.

But when she stopped stringing her words together and “went from four- and five-word sentences to one-word utterances,” her mom Heidi Epstein knew something was wrong.

“We saw her starting to hyperventilate and hold her breath. She stopped walking down stairs and started gagging on her food,” Epstein told the Palisadian-Post in an emotional interview.

Heidi and her husband Jonathan had already been to numerous doctors for the “horrifying things” that had been happening to their seemingly healthy toddler, but Heidi said “when she shook and dropped to the floor, I rushed her to the emergency room.”

When the doctor said “Rett Syndrome,” the first thing Heidi thought was, “Oh, no. No, not that one. That’s a bad one,” she told the Post of the results of a blood test that confirmed every parent’s worst fear.

Almost seven years later at age 10, Hannah, who lives with her family in Rustic Canyon, has scoliosis, a breathing disorder, digestive problems, limited speech and very little hand use.

She fatigues easily and struggles to communicate, sometimes able to type a few words but otherwise unable to tell anyone how she is feeling or what she needs.

“She doesn’t have play dates, tea parties, go to ballet class or go to the movies. She can’t tell me really where it hurts when she’s in pain,” Heidi said.

Hannah, who Heidi said loves to read and swim and laugh with her sister, now 13, is in therapy seven days a week to keep from sliding backward.

“The girls are smart. They’re just trapped in bodies that don’t work,” said Epstein of the estimated 16,000 girls and women with Rett Syndrome in the United States.

The Rett Syndrome Research Trust (RSRT) describes Rett as the most physically disabling of the autism spectrum disorders. It affects girls almost exclusively and strikes at random in early childhood.

Symptoms of Rett Syndrome, a disorder caused by a rare gene mutation, are similar to those of autism, cerebral palsy, Parkinson’s, epilepsy and anxiety disorders—all at once. Many girls with Rett live into adulthood, but medicine can only offer supportive measures, the RSRT states. And as of yet, there is no cure.

“I didn’t even know if I’d ever get out of bed again,” Heidi said of the moment when she heard her daughter’s diagnosis nearly seven years ago.

In addition to volunteering her time on the board of the RSRT, seven years ago Heidi and Jonathan started an event to raise money to find a cure for Rett Syndrome.

“Rett Syndrome is really poised to be one of the first neurological diseases to be cured…It’s not really if there will be a cure, but when, and if it will be in time for my daughter,” Heidi said.

Along with Marci and Rudy Valner, parents of a little girl with Rett named Gaby, the Epsteins are co-chairing the Seventh Annual Hope for Hannah and Gaby Gala on Thursday, Oct. 29 at The SLS Hotel in Beverly Hills.

“Everything that we raise goes directly to research,” Epstein explained, adding that the event is a lot of fun, with restaurants donating food for the booths and a cocktail party that Hannah herself will attend before the program gets going.

“We usually have between 300 and 400 people at the event. Last year we raised over $700,000. It was an amazing year,” Epstein said.

“[Hannah’s] therapist asked her if she could meet anyone in the world who would it be, and she typed, ‘Someone like me.’ And when the therapist asked her about her hopes and dreams, she typed, ‘I hope for a cure.’”

“I can’t look at my daughter every day and not fight for a cure,” Epstein said. “She can still say, ‘I love you,’ and those three words mean more than anything.”

For more information or to donate, visit: rsrt.org/support-rsrt/events/hope4hannahgaby7/.