MOEBIUS SYNDROME IN THE NEWS
You all may have seen this story already, but just in case you haven't, check out the story of Lea Dozois and her child with Moebius Syndrome.  It shows how just one person can make a difference:
"Lea Dozois struggled with the idea when a Dunedin woman insisted on putting together a fundraiser for her special-needs infant daughter.
The young mother felt awkward being on the receiving end of so much generosity.
Eventually, she embraced the idea, after she realized saying no would effectively deny the joy of giving to the Dunedin woman, a recent breast cancer survivor who wanted to pay forward good deeds others had done for her.
Lea's change of heart helped her realize “you just have to take care of your family and not care what anyone else thinks.”
Family Came Together Sooner Than Expected
Lea, a 2004 Dunedin High School grad, said she and boyfriend Joel Lacey didn’t expect to get pregnant last October.
Lea, 25, had every intention of being a singer, and the music scene in downtown St. Pete seemed like a good place to start. So she transferred from her job at Earth Origins health food store in Palm Harbor to one in downtown St. Pete after graduating in 2009 from the University of South Florida. "I didn’t know what I wanted," she said.
That’s where she met and quickly fell in love with her Earth Origins co-worker, Joel, 23, a Vermont native whose mother has a passion for holistic living.
Their excitement of being first-time parents took an unexpected turn just three days after Lily Laceywas born on July 2.
Infant Lily couldn’t suck, making feeding difficult, and one of her eyes had a tendency to roll backward. The doctors quickly determined Lily had a rare birth defect called Moebius syndrome, which is caused by an absence or underdevelopment of specific nerves that control eye movement and facial expression.
Doctors were telling Lea the worst: Her baby could be deaf, blind, mentally disabled or autistic. Between 30 and 40 percent of children with Moebius syndrome have a form of autism, according to the National Institute for Neurological Disorders and Stroke.
As children with Moebius syndrome get older, other symptoms become more apparent, such as speech impediments and an inability to move the eyes back and forth, according to NINDS, but the most dominant symptom is permanent facial paralysis.
Mom and Dad Are Learning Along with Lily
“I couldn’t handle it in the beginning,” Lea said as she tearfully recounted the days after Lily was born. “You see pictures some of the kids who have this and your heart just drops.” You worry, “is she gonna be that kid that everybody picks on?”
Joel told her, “'We’ll deal with it as it comes',” she said. “He brought me back.”
As the weeks passed, the extent of Lily’s condition became clearer. Her face is only partially paralyzed (on the left side), she suffers from moderate hearing loss in one ear, and her motor development is delayed. At 4 months, she still behaved like an infant, Lea said. At 8 months, she was just beginning to hold her head up. Now at 10 months, she recently began to roll on her side and has figured out how to put her thumb in her mouth.
Lea and Joel celebrate baby's first moments that many parents take for granted.
“The first time she followed a toy with her eyes, we were ... !" Lea raised her arms in mock excitement.
To help her catch up, Joel’s mom, a massage therapist, suggested craniosacral therapy, a type of massage that focuses on the membranes and fluid surrounding the skull and spine. Lea also takes Lily to occupational therapy and physical therapy sessions three times a week, which employ techniques such as joint compressions and body scrubbing to help stimulate Lily's nerves.
“She was a totally different baby,” Lea said. "Within a couple weeks, she wasn't hitting herself as much — just, with her coordination."
For a time, the couple shared one car between them. They struggle but they plan ahead, and with Joel’s employee discount on groceries, WIC, Medicaid and an understanding employer (Lea now works as a leasing consultant in the same apartment complex where she lives), they manage to make ends meet and remain grateful.
“I wouldn’t want another baby who doesn’t have any problems over having her. Now I actually have a purpose. She’s giving me a purpose,” Lea said.
Good Samaritan's Tragedy Derails Fundraiser
A fundraiser for Lily was all set for May 3 at Maurice Jewelry Design with the intention of helping to raise $3,200 for Lily to attend a five-day intensive Integrative Intentions therapy program, which was recommended by her craniosacral therapist Anne Wister of St. Petersburg. People who have attended past intensive programs report miraculous results, Lea said.
That fundraiser was canceled recently when the Dunedin organizer learned her cancer had returned with a vengeance, this time to her bones. “I am so very sorry, I tried to get someone to take it over but it is just too late,” she wrote to Lea in an email.
But with the next weeklong therapy program in Florida coming up in November, Lea is trying to figure out how to make it work.
As Lea's father always taught her: "Everything in life is about perspective."
“This happening was probably the hardest thing I had to deal with,” Lea said, sitting at a Starbucks with 8-month-old Lily sleeping in a carrier nearby. “But I’m glad it happened to us.”
So far, she's raised $495."


“The person who makes a success of living is the one who sees his goal steadily and aims for it unswervingly. That is dedication. ”--Cecil B. DeMille (1881-1959)


“Ideas are like stars; you will not succeed in touching them with your hands. But like the seafaring man on the desert of waters, you choose them as your guides, and following them you will reach your destiny. ”--Carl Schurz (1829-1906)