Siera Rushin was born a normal, healthy baby, and she developed right on time for for the first 18 months of her life.
"She was feeding herself with utensils, dressing herself, brushing her own teeth, saying words, walking," said her mother, Lisa Rushin.
But then Lisa noticed a change in Siera. After going through rounds of medical tests, Siera was diagnosed with Rett Syndrome when she was two years old. It's a neurological, developmental disorder that primarily affects young girls, and leaves a once typically developing toddler in need of help for every aspect of daily life.
For every 10,000 to 23,000 births worldwide, one child is diagnosed with Rett Syndrome. The symptoms include loss of speech and motor control, compulsive hand movement, disordered breathing, seizures, and severe anxiety.
Siera has been living with the disease for 22 years.
"She has no use of her hands, no speech, scoliosis, a seizure disorder, a heart condition, lots of breathing issues, acid reflux disease, sleep issues," explained Lisa. "I mean the list is never ending, so she's a full time job but she's one that I won't give up on."
Lisa says when Siera was diagnosed, there wasn't much information about Rett Syndrome available. Now, she works to raise awareness about the disease as the Michigan regional representative for the International Rett Syndrome Foundation.
"So we're getting there, but there are still probably thousands of girls not diagnosed or misdiagnosed," Lisa said.
She hopes to help families dealing with Rett Syndrome, and help her daughter in the process. Lisa wants people to understand Siera is a normal 24-year-old in many ways. She loves being out on their boat in the summer, watching musicals, and cheering for college football games.
"The lessons she can teach us our invaluable," said Lisa. "Strength, unconditional love - the strength she has to take everything at her and keep fighting is amazing."
Governor Snyder proclaimed October as Rett Syndrome Awareness month in Michigan, and Lisa is spearheading an event to raise awareness this Saturday at the State Capitol. With the help of local firefighters and police, Michigan girls with Rett Syndrome will climb the steps of the capitol, many of whom cannot walk, to show that they are still able to reach the top with the help of others, despite their challenges.
More than 30 of the "Blue Sky" events will be held in seven different countries simultaneously at 11 a.m. EST.
The community is invited to attend tomorrow morning and help cheer the girls on as they make their climb. People are encouraged to wear purple, the official Rett Syndrome awareness color.