Rebecca Foley has not always been able to go on family vacations. As a 12-year-old with Cerebral Palsy, she has needs that have to be met around the clock, often preventing her from being able to make trips with dad Jack and 15-year-old sister Joanna.
But for two weeks this summer, Rebecca will be the focal point of a trip across the United States, to celebrate who she is and to raise awareness and funds to support families with children who also suffer from Cerebral Palsy.
Jack Foley, an ordained Evangelical Presbyterian Church (EPC) pastor who has served Presbyterian Church (USA) congregations at First Presbyterian Church in Fort Smith, Ark., FPC- Calhoun, Ga., Silver Creek Presbyterian Church in Rome, Ga., and the EPC congregation at Covenant Presbyterian in Rome, will travel with both his daughters to visit with family and friends at various stops on a trip to the western United States. Not only will the trip be one to serve as a vacation, it is meant to educate people about Cerebral Palsy, the needs of those who live with it and those who look after them.
“It is a vacation to have fun, but its true purpose is to educate and do some good in helping others,” said Foley, who now serves as the chaplain and bereavement coordinator for Heyman Hospice and associate chaplain at Floyd Medical Center in northwest Georgia. “We want people to show an interest in the trip and support efforts to help those who deal with Cerebral Palsy.”
The Treasured Tyrtle Project
The reasons behind this Treasured Tyrtle Project – named in honor of a collection of turtles Jack and Rebecca’s mom Tammy started for their youngest daughter years ago – are to honor and celebrate Rebecca’s life, raise awareness of Cerebral Palsy and to raise scholarship funds to help children and their families affected by the disorder. Those scholarships will provide opportunities to attend special needs camps, and purchase equipment and supplies, such as handicap-accessible vans and other items needed to help children coping with Cerebral Palsy.
The Foleys’ adventure will take them on a cross-country trek starting on June 29 when they leave Rome. The first stop on the trip will be in First Smith, Ark., where Jack served as an associate pastor at First Presbyterian Church in the PCUSA from June 1991 to March 1994.
Along the way, Rebecca, her dad and sister will visit Amarillo, Texas; Carlsbad, N.M.; Tucson, Ariz.; Las Vegas, Nev.; Salt Lake City, Utah; Mount Rushmore, S.D.; Denver, Colo.; Wichita, Kan.; Fulton, Mo.,; St. Louis, Mo.; and Chattanooga, Tenn., before a return to home in Calhoun, Ga., on July 13. By the time the family gets back to Georgia, they will have journeyed across 22 states in two weeks.
They will make some stops for “meet and greets” along the way, allowing people to get to know Rebecca and share a day in her life.
Jack and Joanna have made several “daddy-daughter” trips and were talking about traveling out west to some sites they had not seen. Rebecca’s condition, which prevents her from walking, talking or communicating in a normal way, and requires constant attention from her caregivers, has not allowed her to make many of the trips.
As Jack started thinking about the trip, a seed was planted. Why not take Rebecca with them, making stops along the way, and chronicle their journey, all to celebrate her life but also to educate others about her condition?
“We can celebrate who she is and help others with the same struggles,” he said. “Most people don’t have a clue what families go through with a child that has Cerebral Palsy. This is something that hopefully will help people better understand what folks go through when they deal with this every day.”
Tammy wants the excursion to be a successful one, not only for her daughter but for those whose lives may be impacted positively by it.
“I hope God blesses the trip and the Treasured Tyrtle Project more than we can imagine,” she said. “I want people to be aware of Cerebral Palsy and the fact that it encompasses such a broad spectrum of issues. More importantly, I want people to realize that even though kids may have special needs, they still need our love and attention.”
What is Cerebral Palsy?
Cerebral Palsy is a number of disorders of the developing brain that affect body movement, posture and muscle coordination. While not a disease that is progressive nor communicable, Cerebral Palsy usually occurs during fetal development, before, during or after birth, during infancy or early childhood.
The cause of Rebecca’s affliction is not known.
While there is no cure for the developmental brain damage that causes cerebral palsy, training and therapy can help improve muscle function and coordination. Physical and occupational therapy often allow children with Cerebral Palsy to lead a more typical and improved quality of life.
Rebecca’s condition has limited her abilities to communicate with others, especially those family members who care for her every day.
“Jack has often told me that he misses the eye contact with her,” Tammy said. “For me, it’s missing out on the hugs and the ‘I love you, mommy.’ She can’t tell us if she’s hurting or if she does not feel good. The hardest part is not having the verbal communication.
“Things are different, but I don’t do anything any other mother wouldn’t do. You love your kids and you take care of them, no matter what they are facing.”
Discovering the disability
Rebecca Shea Foley was born Sept. 6, 2001, in Calhoun, Ga. She had breathing issues and spent six weeks at T.C. Thompson Children’s Hospital in Chattanooga, Tenn. Numerous tests and weeks later, it was revealed that Rebecca had paralyzed vocal cords.
About four months after her birth, Rebecca was not gaining weight and did not seem to be developing in the manner Joanna did at the same age. Sensing something was not right, the Foleys took her to be checked. A CAT scan confirmed that she had delayed development and was simply slower than other children at that stage in life.
“We were hopeful at that stage it was just temporary,” Jack recalled. “She went through various forms of therapy and saw a different neurologist who broke the news to us. That’s when reality set in.”
Rebecca had Cerebral Palsy. Not only that, the neurologist told the family that she also had mental retardation, autism and epilepsy, compounding matters for the infant.
“I’m more of a realistic person. It was a gradual realization for us, but by the time the doctor finally told us, it sort of confirmed what I had thought,” Jack said.
Tammy said the news was sobering.
“You’re disappointed when you hear something like that because you have dreams for your kids,” she said. “It really breaks your heart, and at that time, Jack and I both mourned what could have been. We just decided we were going to do all we could to give her a better life.
“I really don’t know that I’d fix Rebecca even if I could. She wouldn’t be the Rebecca we know and love.”
Rebecca’s condition requires constant attention from her parents and others who assist. She has to be helped into and out of bed, fed, bathed, clothed and needs assistance getting into and out of her wheelchair. It can be a taxing experience but one that the Foleys have embraced.
“We certainly want people to know that she is a happy, healthy girl, but her day-to-day life is not easy,” Jack said. “She is totally dependent on us to meet all her needs.”
Despite all that it takes to care for a child with handicaps, Rebecca is viewed as a gift by her family.
“She is a gift. People without children with a handicap take so much for granted,” Jack said. “There are days when Joanna seems to be an only child because we can’t talk or communicate with Rebecca. But you still love that person whatever their disability may be. That’s how things are with Rebecca.”
The joy Rebecca brings more than compensates for her disabilities.
“Rebecca is not perfect by any means, but she is perfectly Rebecca,” Tammy said. “She is such a joy just as she is. It means a lot to me that God trusted me enough to take care of His special angel here on earth. To see her smile and hear her laugh … it just lights up your world.”
Despite her disabilities, Rebecca has a knack for bringing out the best in people around her, simply by being who she is. She is the type of young lady who can say something without saying anything, and that says a lot.
“People are really drawn to Rebecca, and she brings out the best in them, just because she is who she is,” Jack said. “God is using all of us in different ways; we all have gifts for ministry that we try to use in our own way. Rebecca certainly has hers. To know that my daughters are affecting people’s lives makes me proud as a parent.”
Tammy sees that as well and has even used Rebecca’s story in her job as a dental hygienist to reach out and minister to others.
“Because of what I’ve been through with Rebecca, I’ve been able to help others, to share with them what it is like to take care of a child with special needs,” Tammy said. “She has touched more hearts without saying a word than you can ever imagine. Everyone who comes in contact with her is attached almost as soon as they meet her. That says a lot.”
Because of her condition, Rebecca gets a lot of attention, something that could make another sibling a bit jealous. Jack admitted he has seen that at times in Joanna. More times than not, however, he sees a teen seeking to give support and love to a younger sibling who can’t help herself.
“She has stepped up to help,” Jack said of his oldest daughter. “She’s had moments of jealousy, but taking care of Rebecca is something she has known her whole life. She hasn’t known it any other way.”
Tammy said her oldest daughter could be angry about all the attention her younger sister gets.
“She has every right to be upset with her little sister because of the time she has lost due to Rebecca’s issues,” Tammy said of Joanna. “But she loves her little sister and has the biggest heart for special needs kids and adults. I really feel like she will do something in her life to help people with special needs.”
Joanna takes it a little further. She often uses her sister and her disability as the topic of papers for school assignments, using them as a tool to educate people about Cerebral Palsy.
“That says a lot about a 15-year-old,” Jack said with pride. “She tries to use her sister’s situation to make others aware of those with special needs.”
Tammy added, “Joanna is awesome. She loves Rebecca and tells her story to help others. She is a special young lady. We have been very blessed with both our daughters.”
A passage of inspiration
As they make preparations for their summer travels and the opportunity to educate others about Cerebral Palsy in an attempt to raise money to support those impacted by it, the Foleys have adopted a passage from the Book of Acts as their spiritual reference and inspiration for such an endeavor.
The passage, Act 20:35, reads, “In everything I did, I showed you that by this kind of hard work we must help the weak, remembering the words the Lord Jesus Himself said: ‘It is more blessed to give than to receive.'”
“Fundraising was not part of the initial trip, but it evolved along the way,” Jack said, acknowledging the reason behind use of the Acts passage. “That’s a passage I have used throughout my ministry. I always thought of it in terms of being blessed to give to others rather than receiving from them, to help the poor, and never thought about it in relation to disabilities. But it tells us to help the weak, those who suffer from disabilities like Rebecca.”
It only makes sense for that Scripture to apply to this venture, given the support the Foleys have been given by so many others throughout Rebecca’s life.
“We certainly have been recipients of numerous gifts through the years to help our situation,” Jack said as his emotions got the best of him. “We know the expenses can be exorbitant, that there is such a need. We want to do what others have done for us, to be able to help people in similar situations.”
Knowing that the story and life of his daughter can help that effort is a bit overwhelming for the long-time pastor.
“She’s not able to do a lot because of her disabilities, but for Rebecca to have a part in being able to help others is such a wonderful experience,” he said, choking back tears. “This is her opportunity to be able to help other people, and that’s the best thing that could come out of this.
“All of us are God’s children, and He has a purpose for each of us, including Rebecca. She is a precious child of God. I’m proud of both of my girls for sure.”
Want to help?
Anyone wanting to make a donation to support research for a cure to Cerebral Palsy or to raise funds to assist children and families affected by the disorder can visits the web site at http://www.treasuredtyrtle.com/ and use the DONATE button to make a contribution. Donations also may be sent through the mail to Treasured Tyrtle Project, 20 Barnesdale Way NE, Rome, GA 30161.