KINGSTON - Grace Caldarone is an active, happy, six-year-old growing up in a loving family. Her dad Chris, mom Marybeth and brother Christopher obviously adore her. But lurking within her body is a disease that, if it follows a progression similar to her mother's illness, will leave Grace wheelchair-bound by the time she is in high school.
Marybeth and Grace both have the rare neuromuscular disorder Charcot-Marie-Tooth disease, a syndrome that causes damage to the peripheral nerves of the arms and legs and can lead to severe disability. Motor and sensory nerves both are affected, and the effect can vary in severity, causing loss of movement and feeling, and pain, edema and respiratory weakness.
Marybeth has suffered with CMT since she was diagnosed as a toddler. The progression of the disease was severe and rapid. By the time she was 14, she was confined to a wheelchair. Though its progression has slowed over the past two decades, the disease has robbed her of the use of her legs and limits use of her lower arms and hands.
While the family continues to seek the best medical advice, they also have strong faith in God and trust in his will. As parishioners of Christ the King Church in Kingston, they draw strength from their belief that God will give them the courage to meet whatever the future may bring.
Two years ago, shortly after Grace had been diagnosed, she and her dad were out shopping together. When the little girl found a statue of an angel, she wanted to buy it for her mother. When she asked what the word at the bottom was, Chris answered, "Courage." She knew she had found the perfect gift for her mom.
Since that time, mother and daughter have special names for each other. Grace calls her mom "my mother of courage"; and Marybeth's Grace is "my daughter of courage."
Courage has become the keystone for the whole family, and finding gifts which represent the word has become a family tradition. For example, Chris looks for purple items. "Purple is their favorite color, because it represents courage," he explained.
"I have never been dragged down by what I have," Marybeth said during a recent interview at their home. "I have accomplished much, and still have more to do."
With a Master's Degree in communicative disorders from the University of Rhode Island, Marybeth is a speech/language pathologist at Chariho Middle School. Chris is a teacher at Charlestown Elementary School. The two met while Marybeth was a student at URI. Chris said,
"I fell in love with her as a person. Her wheelchair didn't matter," Christ said.
Both Caldarone children attend Msgr. Clarke School in Wakefield. Christopher is in the sixth grade. "Science is my favorite subject, but I always get an 'A' in religion," he said.
With a little coaxing from her mom and brother, the shyer Grace said she likes drama and math. "But I also like to swim, play soccer and T-ball. And I like to dance," she said, performing a running jump in her living room and landing perfectly on the sofa. She is in Kindergarten and recently starred as a harem girl in the school's production of "Alladin." She is also a Daisy, a prelude to becoming a Brownie, and proudly displays a vest decorated with colored pedals of every hue, each earned for "a good deed."
Marybeth and Chris rave about the quality of education both children are receiving at Msgr. Clarke. Grace also gets special care at the school and is enrolled in an adaptive physical education course taught by a certified instructor. Additional physical and occupational therapy are provided outside of school.
The family's support system consists of "Nonna" and "Poppy," Marybeth's parents, Eugene and RoseMarie Sidoti, who moved from New York to Narragansett to be closer; "Grandpa," Christopher's father, James, who moved from Florida and temporarily resides with them; and Marybeth's four brothers and their wives, who live in New York with their children. They also include the school faculty and the parishioners and pastor of Christ the King, Father Joseph D. Creedon, and most recently the Knights of Columbus among their extended family.
(This article originally appeared in The Providence Visitor)
For the Calderone family, 'Lourdes is a place to find peace'
Faith and courage: Two words that go hand-in-hand as far as the Caldarone family is concerned.
Recently, thanks to the intervention of one of Marybeth's brothers in New York, Peter Sidoti, and his wife Meg, Marybeth and Chris were notified that Grace is among eight children and the only one not living in New York to be named to the 2007 Lourdes Children program by the Knights of Columbus, Our Lady of Lourdes Council 5890, Washingtonville, N.Y. Through money raised by the council from raffle tickets and personal donations, the council will pay to send Grace and one parent on a pilgrimage to Lourdes, France, July 1-10, as part of the 53rd U.S. National Pilgrimage To Lourdes.
The strong familial connection to New York Grace is Peter and Meg's godchild and the family is well-known at St. Patrick Church in Highland Mills, N.Y., as they travel frequently from Rhode Island to New York for baptisms and confirmations of their nieces and nephews was one determining factor in her selection, as is the unpredictability of her disease. Even though she lives in Rhode Island and K of C councils usually support local charities and individuals, after a meeting with council members in New York, Grace was selected for the trip.
With the support of parish, family and friends, the whole family will be going to Lourdes in July. In fact, young Christopher, whose birthday is July 7, will be spending it in France.
"This is a journey of faith that we will take as a family," Marybeth said.
Prior to being notified by the K of C, Marybeth said she had been thinking about Lourdes quite a bit. She had spoken to others who had made the pilgrimage and they called it "an amazing trip," she said.
Marybeth said, although she will be praying for a miracle for Grace, the most important thing she will be seeking at Lourdes is hope, inner strength and continued courage to accept God's will.
"We continue to cover all of the bases as far as medical treatments are concerned," Marybeth said, adding that when the family returns from Lourdes, she and her husband will be seeking more information about a Detroit research facility with promising results in CMT.
"We have each other and we are happy," she said. "Lourdes is a place to find peace."
(This article originally appeared in The Providence Visitor)
