Hillary
“Hillary is the boss and queen of our house and we do everything on her schedule.”
Hillary was at the pier for a “field trip” watching pelicans and eating french fries and ice cream with her mom and sister, Lorie.
Hillary turns 31 in June and has Rett Syndrome, a rare neurological disorder that affects girls almost exclusively. It is a sporadic mutation of a gene on the x chromosome. There is normal growth and development in the beginning but from six months of age to two years of age, they start to regress and lose the purposeful use of the hands. There is slowed brain and head growth and problems with walking, seizures, and intellectual disability.
Hillary could walk and say a few words at 18 months, then started regressing. Today she can’t walk or use her hands, but her sister says she understands everything.
“We grew up in a bilingual household so she understands what I say in Spanish,” says Lorie. “She finds ways to get her point across and has little fits if she gets frustrated or angry. She closes her eyes to say yes. All of the Rett girls have hand movements. Hillary usually puts her hand in her mouth when she is happy. Her friend Kaitlyn also has Rett syndrome and sometimes she comes over to the house to watch movies. They like to be together.”
An eye gauge on Hillary’s computer is like a mouse that syncs up to wherever she is looking on the screen. It will zoom in and say what is in that picture. It also has words and she uses it to communicate. Sometimes she uses it to say, “Leave me alone.”
Lorie and her mother give Hillary full-time care. There is a government program that provides assistance for personal and respite care, but it is hard to find good help.
“Providing this care is hard It is hard work and you have to love it. Someone could make the same money working at a McDonalds,” Lories says. “Transportation is also difficult. Today is the first time we used the BRAT to take her out and it worked well."
Hillary’s mom calls herself an “old mom” but she does what is best for her girls. She moved to Fairhope for the schools and fought to get an air-conditioned school bus for Hillary and other kids with disabilities. “They didn't have air-conditioned buses and it is tough for kids like Hillary,” says her mom. “She can't sweat because her body can't heat itself."
Lorie says they are happy to tell Hillary's story and educate about Rett syndrome. She says the best question to ask about a condition is ‘what is her diagnosis?’ Hillary has made their family unit strong and has taught the importance of self-sacrifice and putting others first.
“Even in her situation, Hillary finds happiness in the small things,” Lorie says. “She makes us more empathetic. It is not about us, it is about others."
