Less than two years ago, Amanda Box received life-altering news.
Her youngest child, Jacey Barron, now 11, was diagnosed with rheumatoid arthritis (RA) following a knee injury that would not heal. But that was just the beginning.
As she spoke of the winding road that led to Jacey's final diagnosis, Amanda did so with a light heart and renewed spirit thanks to a gift recently bestowed upon her family. Theirs was one of four chosen to take part in Dream Day, an annual event hosted by Fossil Rim Wildlife Center and community sponsors, including Glen Rose Medical Center, LDL Educational Resources Foundation and Dinosaur Valley State Park.
"The fact that we were invited to be a part of Dream Day was such a blessing," Amanda said. "Jacey was treated like a princess all day. For just one day, we didn't have to worry about anything."
For families like Amanda's not having to worry is the greatest gift imaginable. Days before the event, the mother-daughter duo had received another dose of bad news. Jacey was going to have to take a new chemotherapy drug, a couple of shots weekly that will come with side effects - nausea, vomiting, fatigue and lowered immunities. But that news was just another bump in the family's journey.
Amanda said once she learned Jacey had RA, she began searching for a pediatric specialist. She learned there were only five in the country who treated children, including specialists at Texas Scottish Rite Hospital for Children in Dallas and Cook Children's Medical Center in Fort Worth.
Following the support of a local Freemason, Jacey saw a Scottish Rite specialist about six weeks later although they were initially told there would be amore than a year-long wait.
The specialist said several of Jacey's joints had been affected and suggested she see her eye doctor twice a year.
Jacey had headaches regularly and her vision was a little worse every year. Those facts led to more tests. While Jacey had worn glasses for some time and her eye doctor expressed concern about the combined symptoms, those signs did nothing to prepare Amanda for the news she would receive.
"The tests revealed excessive fluid on her brain that was squeezing on her optic nerve," Amanda said. "The doctor couldn't even say it. He looked at me and said, 'All of her visual capabilities will be gone.' He couldn't say it to her face she would one day go blind. She is going to go blind and there is nothing we can do about it."
Amanda was devastated.
But she has learned a lot about life, living in a supportive community and her daughter's strength.
"The reality is Jacey could wake up one morning and no longer see," Amanda said. "As we are faced with that, we have learned honesty is the best policy, she knows the reality but we take each day as a new day and approach it as it comes. We never stress or fret about tomorrow - God's got this. As for us, we have learned to appreciate the little things. We take time to look at rainbows, sunsets and the moon. I have to know when her vision is gone, she will have the memories."
And she will no doubt have memories of that dream day when the most important things - family and fun - were in perfect focus.
Other local students, Cade Turner, Cory Rogers, Jonathan Anaya and Rio Cantu will also remember that dream.