TFG Charity of the Month

GIRLS INTERRUPTED
WHAT IF YOUR INFANT DAUGHTER AT AROUND 10 TO 18 MONTHS OLD WAS ROBBED OF THE
ABILITY TO TALK, WALK, USE HER HANDS OR MOVE AROUND NORMALLY? WHAT IF HER
AFFLICTION COULD BE CURED? WHAT WOULD YOU DO TO SAVE HER?

flower display

Every five hours another girl is born with Rett Syndrome.
As prevalent as Lou Gehrig's disease or Amyotrophic
lateral sclerosis (ALS), cystic fibrosis and Huntington's
disease, Rett Syndrome is the leading cause of severe
neurological impairment in females. The syndrome, created by a random gene mutation is classified as the most severe form of autism that could afflict any baby girl. It causes uncontrollable seizures, gastrointestinal pain, scoliosis and even sudden death.

Sarah and Ingrid

“We started being suspicious that something was wrong with our daughter, Sarah, when she was around six months of age. Sarah still tucked her thumbs into her palms and could not hold her head up very well. At 10 months, she lost the ability to hold her bottle, babble, smile and crawl. We thought she was dying and frantically tried to figure out what was wrong. We feared that we would find out too late and lose her. We flew her to Children’s Hospital of Pennsylvania (we were living in Mississippi at the time courtesy of the Air Force), but no one could figure out what was happening. It’s weird—there was a poster about Rett Syndrome hanging on the wall and I remember reading it and thinking, “Oh my God, I hope she doesn’t have that,” says Ingrid Harding, founder of Girl Power 2 Cure, a non-profit dedicated to raising funds for treatments and a cure for Rett Syndrome.

After a first test result for the syndrome came back normal, it took the Hardings three more years to realize what was happening to their daughter. It wasn't until Sarah was four years old that a more comprehensive test showed her to indeed be suffering from Rett Syndrome.

Harding says that life with her daughter is bittersweet. “She is six years old now, so it’s getting more and more difficult to hold back the tears when we see the other kids her age doing things so effortlessly. She is so brave, though. Imagine the frustration of not being able to communicate. She depends on us for every part of her day: feeding, diapering—the works. We usually carry her from place to place in the house, although sometimes she will walk with us holding her up under the arms. She has a great smile and an infectious giggle —and I wouldn’t trade them for walking. She has taught me so much. She definitely taught me about patience and that there is a beautiful soul inside every human being, regardless of outward appearance and capability. She has taught me to persevere and fight and that every day is a new day with a new chances and new possibilities,” Harding tell us.

Harding started Girl Power 2 Cure in May 2006 in hopes of bringing mainstream awareness of Rett Syndrome to the public, while helping to the raise money it will take to cure Sarah and girls like her.

“We are all about harnessing the spirit of girls as volunteers, mentors and a power of positive change in their communities in support of their fellow girlfriends who are suffering from Rett Syndrome,” says Harding, who also created a Girl Power CD as a source of revenue for the cause and as a gift for the girls themselves because “Sarah has always responded amazingly to music. She does so much more when music is playing. I had to share this discovery with the other girls out there in hopes that it has a positive effect on them, too.”

The organization endeavors to get a CD, which also features therapy activities that go with each song, out to every family with a daughter suffering from Rett Syndrome and to brand the Girl Power flower icon as a nationally recognized symbol (think breast cancer's signature pink ribbon). “A girl who wears the flower will be telling the world she has helped a girl with Rett Syndrome and is part of a movement to cure a disorder that is afflicting her fellow girlfriends,” Harding says.

When asked what advise she has for other parents with daughters suffering from the syndrome, Harding says, “Stay strong. Believe in your daughter. Talk with her, dream with her, kiss her goodnight. Have the highest aspirations for her. She will bring people together like only an angel could do. She teaches through her silence and her pain. She reminds all of us how best to live our lives. Fight for her. She will be able to tell you how it all felt one day.”

Harding speaks from optimism and education. In fact, Rett Syndrome was proven reversible this February. “We know we can get our girls back. Hundreds of thousands of them are waiting for us,” Harding adds.

What can you do to help?

Here, Harding gives you five ways to power through Rett Syndrome.

	Volunteer. Go to www.girlpower2cure.org for ideas on how to get involved in your community.
	Donate. Only three percent of donations is used for overhead. Eighty percent goes directly to research and seventeen percent is used to help girls through our Girl Power 2 Cure programs. For each CD sold, we send a CD to a Rett family as a gift.
	Dress up. Go to www.dressup2cure.org and participate in our annual “Dress Up 2 Cure” fund raiser on April Fools’ Day. It is a blast and helps so much.
	Spread the word. You can help just by telling someone about Rett Syndrome, passing along the story and praying for our girls.
	Have faith. Almost half a million girls and women are trapped inside dysfunctional bodies. There is scientific evidence that there is no permanent damage and they can be saved. One day I hope my daughter will say “I am a Rett Syndrome Survivor.”

THE FAMILY GROOVE donates a percentage of its revenue to its featured Charity of the Month.