The first day your child goes to school gives any mother butterflies, but imagine how Ingrid Harding must have felt.
She was going against the norm, bringing her daughter, who has a neurological disorder called Rett Syndrome, to a “regular” school to be integrated with “regular” kids. She worried the other children would be afraid of Sarah, who can only communicate through noises. She can’t walk independently, and has almost no motor control, constantly moving because of Rett. The most severe form of autism, it strikes in young girls and stays with them for life.
But Ingrid and little Sarah were in for a surprise in that kindergarten classroom: instead of being shunned, Sarah was a hit, drawing the adoration of the other girls in class. They wanted to help her, sit with her, and make her first day of school as special as it was for them. That’s when Ingrid decided to start Girl Power 2 Cure, a nonprofit on a mission to cure Rett Syndrome through the awesome power of girls working together.
Girl Power All Over the U.S.
Less than 6 years later, Girl Power 2 Cure – based on Amelia Island – has a nationwide network of families dealing with Rett; funds research to cure it; and recruits volunteers to help raise awareness and funding. This year, it was an official charity of Disney’s Princess Half Marathon. The rest of its funding largely comes through more local, grassroots special events brought to life by the spirit of girls.
“I want the girls, themselves, to feel connected and know they played a role in curing this disease,” Ingrid said.
A favorite Girl Power 2 Cure event is its Dress Up 2 Cure day, in which everyone wears funny outfits to school and brings in their spare change for Rett Syndrome Research. There are also “Gardens of Hope,” in which people donate $1 to decorate a Girl Power 2 Cure flower that is then placed on the wall of the participating store or school.
Moving to Amelia Island
The Hardings, including Ingrid; her husband, Peter, a physician; and their three children, Gretchen, Sarah and Pierce, moved to Amelia Island two years ago. They decided they had had enough of the cold weather up north, especially since it made Sarah’s symptoms even worse.
That beach scene screen saver on Ingrid’s computer called out to her. The family left their New Jersey home in search of a beach community with a small-town feel that was close to a city with a top-notch children’s hospital. They knew they were home when they arrived on Amelia Island.
Ingrid said the local school system changed everything for little Sarah, who is now 11 and attending classes in Yulee.
Sarah’s teachers here believe in her intellectually. They’re challenging her with more advanced schoolwork. And, contrary to the old view that Rett girls were severely mentally retarded, Sarah is showing signs that she is learning.
Through a computer program, her teacher gives her quizzes in topics like multiplication and telling time. When the right answer appears on the screen, Sarah is supposed to hit a button. Even with her limited motor skills, she gets it right 75 percent of the time.
Varying Degrees of Rett
There are varying levels of Rett. Some Rett girls are so severely affected, they are confined to a wheelchair their entire lives, eat only through a feeding tube and have multiple seizures every day. Others’ symptoms are mild enough that they can walk and pick objects up on their own. There is even a woman with Rett who communicates through a computer with the help of a facilitator who holds her finger straight for her as she types. She has a remarkable blog about her experiences at http://spiritdances.wordpress.com/my-rett-body/, in which she explains that there is a bright, functioning mind inside her immobile body.
“Imagine you can hear and understand everything around you, but no one thinks you can,” Ingrid said. “These are little girls. They’re alive, and they’re beautiful. I think of them as little seedlings waiting very bravely for us to come and get them.”
The first REVERSIBLE Neurological Disorder
Doctors have determined that Rett Syndrome comes from one faulty gene that fails to produce a protein the brain needs to function properly. In an experiment with mice, they were able to tinker with the gene, causing the mice to have Rett Syndrome, and then completely reversed the symptoms when the protein was introduced back into their bodies. It was the first time ever that a neurological disorder was reversed. Now researchers studying Rett Syndrome say that its cure may very well open the door to a cure for dozens of other disorders.
Ingrid said the biggest holdup is the lack of funding for research. At the current funding levels, a cure could be 50 years away.
But Rett girls don’t have that kind of time. They suffer daily and can die young from complications such as passing in their sleep because of heart and breathing problems.
That’s why this Amelia Island mom is so determined to get the word out about Rett, to bring in the funding to speed up clinical testing and to finally see her little girl walk, talk and play.
“Every day she wakes up again, I’m thankful she made it, even though it was hard to get through that day,” Ingrid said. “That’s one more day, one more chance we have to cure her.”
Even if Sarah doesn’t live to see a cure, Ingrid said her heart belongs to the cause and to all of the girls and women sentenced to a life with Rett Syndrome.
“I’ll fight for all of them,” she said.
How You Can Help
Rett Syndrome plagues close to 500,000 girls and women worldwide, making it just as prevalent as better-known conditions like ALS and Huntington’s Disease. It is a sporadic gene mutation, so it can strike any little girl, regardless of socioeconomic and cultural group, Ingrid told me.
If you’d like to join the fight to help cure Rett Syndrome, you can find out more about Girl Power 2 Cure on their website at www.girlpower2cure.org.
Watch the video below to hear Ingrid tell her story.
See more videos on Girl Power 2 Cure’s YouTube Channel at http://www.youtube.com/girlpower2cure.