Tatum Moore is a beautiful 3-year-old girl. She and her older sister Tanner are very similar: silky blond hair, striking blue eyes and enough frenetic energy to power an 18-wheeler.
But there's something different about Tatum. Her parents call her a "silent angel," a term used lovingly to describe their daughter's lack of communication skills. She likes to play like any normal child but can't always make her hands do what she wants them to.
Tatum Moore has Rett syndrome.
Rett syndrome is a developmental disorder that usually affects girls and begins to show symptoms in infancy or early childhood. The affected child develops normally through the first six to 18 months of life, before there is a slowing or stagnation of development. A period of regression usually occurs when the child loses communication skills and the ability to control hand movements. Over time, some skills improve, but most people with Rett syndrome require assistance with many aspects of daily living.
Tatum's parents, Tim and Tania Moore, took the news as most parents would.
"It was pretty emotional," Tim said in the living room of his South Jeffco home as his daughters played nearby. That was July 2008. Several weeks later, the couple attended their first Strollathon, an annual event that raises funds for research into Rett syndrome. This year’s Strollathon will be Aug. 8 at Clement Park, and the Moores are trying to get as many people to participate as possible. Registration for the Strollathon begins at 8:30 a.m., and the walk around Johnson Reservoir begins at 10 a.m. There will also be live entertainment, carnival games, lunch, and live and silent auctions, with all the money going to the International Rett Syndrome Foundation.
Anyone can walk in the Strollathon, with or without a stroller, and donations are accepted at registration.
‘Slow to crawl, slow to walk’
While the Moores show great strength in telling how Rett syndrome has affected their family, and how they want to raise awareness about the syndrome, they never thought they'd be in this position.
Tim and Tania Moore were high school sweethearts, graduating from Green Mountain High School and then heading to the University of Northern Colorado together. They both became teachers and eventually settled back in the Denver area, first in Lakewood and now in South Jeffco. They had their first daughter, Tanner, a little more than five years ago, and she has grown into an energetic and talkative young girl.
"Tanner was a normal child," Tania Moore said. "She developed quickly, actually."
Tatum was born two years later, and everything seemed fine.
"She was just slow to crawl, and slow to walk," Tania Moore said of Tatum. "We figured it was autism."
Rett is different than classic autism in several ways, according to the International Rett Syndrome Foundation. First, Rett occurs more frequently in girls, and autism happens more often in boys. In both conditions, speech and emotional development are impaired, and both will cause uncontrolled hand movements. Also, a girl with Rett almost always prefers people to objects, but the opposite is usually seen in autism.
Once every five hours, a girl with Rett syndrome is born, and the disorder affects from one in 10,000 to one in 23,000 girls worldwide.
The Moores consider themselves lucky in one aspect. Tatum never fully learned how to talk and so didn’t suffer the trauma of losing speech.
"Tatum was walking and not talking, so we weren't as devastated as a lot of parents are," Tim Moore said. They're also grateful to the families that have come before them in dealing with Rett. Ever since they've known the source of their daughter's issues, they say they've had nothing but positive experiences with doctors and others.
Five-year-old Tanner Moore is proud of her sister, according to her parents.
"To her, everyone has the syndrome," Tania Moore said, noting that all Tanner has ever known has been a sister with Rett, and she treats it as though it's normal. "She's proud of (Tatum), and likes to show her off wherever we go."
The Moores maintain a positive atmosphere in their home but admit that the situation is taxing. That's one of the reasons they got involved with promoting the Strollathon and trying to raise awareness about Rett.
"It's been kind of like my therapy," Tim Moore said. "I'm not really good at the fund-raising and all that, but at least I can do something."
Tim and Tania also put together signs that rest on tables at area restaurants like Fudruckers, discussing what Rett is and telling how to learn more about it. They also attend meetings with other families affected by Rett on the first Monday of every month at Fudruckers.
Tim and Tania Moore want people to know that Rett syndrome is near the bottom of the list when it comes to research funding. According to the National Institutes of Health, six conditions that are more rare or as frequent as Rett have received much more research funding from government and private sources since 2006.
With increased awareness come more donations and a quicker path to a cure. Tim Moore said that twice in the last few years, scientists have been able to reverse the condition in lab mice, a breakthrough that leads geneticists to be optimistic about a workable cure within the next five to 10 years. And a cure for Rett could lead to significant breakthroughs in related conditions, like autism, schizophrenia and other movement disorders.
"Never in a million years I thought I'd be in this position," Tania Moore said. But because Tatum and countless other girls around the world need help, the couple are going to do everything they can.
"We're trying to get the community involved however we can do that," Tim Moore said.
The fourth annual Colorado Strollathon will be held Aug. 8 at Clement Park to raise funds for research into Rett syndrome. To get involved or to make a donation, call 720-234-7673, or e-mail questions to email@example.com. Learn more about Rett syndrome at www.rettsyndrome.org, the home page of the International Rett Syndrome Foundation.