John and Betsy Hall admit that they have their hands full. They’re both teachers, and with five children and a dog, their Penfield home is constantly abuzz with activity.
But their 7-year-old daughter Grace makes them different from other families. At the age of nine months, she was diagnosed with Rett Syndrome, a neurological and developmental disorder caused by a genetic mutation. The disorder keeps Grace from being able to speak or walk on her own.
As a result, everyone has learned to just roll with it.
“One thing about living with Rhett Syndrome is that we’ve all learned to be flexible,” said Betsy Hall with a laugh.
Grace didn’t always appear to be different, however. Her parents say they first noticed that she was small for her age during the first year of her life, and met certain developmental milestones like sitting later than other children her age, and by 15 months, her progress stopped altogether.
The first test for Rett Syndrome came back negative, but as time passed, doctors determined that all her symptoms pointed to the disorder.
By the age of 4, she weighed just 19 pounds, and the family made the difficult decision to start Grace on a feeding tube. Although she can eat some foods by mouth, Grace still gets most of her nutrients from the tube, connected to a feeding pump.
The device has made all the difference in her health.
“All of a sudden she grew cheeks,” said mom, Betsy. “It’s been a big improvement to her quality of life.”
Grace has never taken more than three steps by herself, and most times, she needs an adult to hold her up with each step. Doctors will not definitively say whether she will walk in her lifetime.
She uses a device called a DynaVox to help her communicate.
And while she can’t articulate many words, Grace’s loved ones say they can easily understand what she’s feeling. She smiles at the sound of singing, puts her head down when she’s bored, and turns it to the right to say “yes.”
But while her family understands her, that’s not always easy to show others.
“Grace is in there, and she gets it, but it’s hard sometimes to convince other people of that,” said her father.
During the week she attends a BOCES class at Dudley Elementary in Fairport, next door to Northside Elementary, where her mother teaches special education.
While the parents say they don’t want her special needs to come before the entire family, each member does their part to bear the burden together. One Christmas her brother Garrett, 9, even said he would give up all his Christmas presents if it meant Grace could walk and talk.
Page 2 of 2 - “We don’t know how many days we’ll have with her, and I try to make it count,” said Betsy. “You laugh through a lot of stuff.”
Grace was recently invited to meet the Fairport cheerleaders as they helped raise money for Girl Power 2 Cure, a non-profit that supports Rett Syndrome research, by “planting” a Garden of Hope at the high school.
Walking into the gymnasium, Grace pulled her parents toward each girl, and many left with smiles. This is the kind of impact her sweetness can have on others who aren’t expecting it, her father said.
“It never ceases to amaze me how much a few minutes with Grace will affect people.”