Thirty-One Faces of Hope: Sophia Galvis and her mom, Tracie Galvis
The lupus community includes people living with lupus, friends, family and supporters across Georgia. For Lupus Awareness Month, we would like to highlight some of our lupus heroes and champions.
Tracie Galvis shares her daughter, Sophia's Story
Most children dream of spending their birthdays with family and friends, eating cake, and enjoying a party to celebrate another year of their life. We never imagined that our daughter’s 12th birthday would be spent rushing to her the ER and receiving a diagnosis of a life-long illness that we knew nothing about.
In sharing our journey of the discovery and life with lupus, it could be a sad story. There are many days that are sad, or hard, or stressful mixed with anger. However, my family has made a choice to choose happiness and positivity. I would like to share our story from that perspective.
Sophia was a happy and very healthy child growing up. She rarely got colds and received perfect attendance year after year in school because she was always able to be there. I give thanks in that because I have heard stories from other parents whose children struggled with unknown symptoms before diagnosis. I remember the day that she had a little rash on her face after being out in the sun, and I thought “oh no, she’s going to have cold sores like I do.” After a few weeks of the rash not disappearing, I took her to the dermatologist who determined it was psoriasis and prescribed a cream. The next week we flew to Puerto Rico and took a cruise. Towards the end of the cruise, we knew something was wrong when Sophia was running a 104 fever, had shortness of breath and her rash had grown exponentially. I googled “rash on face”, and I remember the option read “if the rash has spread across the nose, it is a lupus rash”. I knew this was incorrect because from what little I knew about lupus, my child did not fit the criteria of a lupus patient. She was a healthy child.
Upon landing from our flight in Puerto Rico, we went to the local ER. I remember the doctor walking in the room, looking at Sophia, and her entire facial expression changed. She said "I’m pretty sure I know what she has, but we are going to run some tests, and I’m going to call the hospital nearby who specializes in this”. Looking back, I know that doctor was placed in our lives at that perfect time because not all doctors would have looked at my daughter and known right away. They returned to the room quickly and had both me and my husband put on masks and gear to provide a barrier of protection because Sophia’s white blood count was at 0. We had just left an airplane, a cruise ship, and several third world countries, all while Sophia’s white blood count was at 0. I know God has His hand protecting her the entire time. At midnight, on July 1st, her 12th birthday, she got to ride in an ambulance to the children’s hospital that specialized in lupus. The ambulance drivers kept her laughing, and the doctors were so kind. She was diagnosed with SLE, lupus nephritis, stage 4 kidney disease. One week stay in the hospital and a treatment plan in hand, we were sent home to adjust to a new life.
If I could sum up Sophia’s journey in a motto, it would be: My Lupus disease may be chronic, but my attitude is iconic. Yes, she (and I) struggle on days with all the feelings of grief through living with a childhood life-long disease. However, her strength and positive attitude shine through. I remember while she was in the middle of the Cytoxan (chemo) treatments with her hair falling out and her body swollen from the prednisone, she looked at me and said “I am so glad I have lupus because it has brought our family even closer, and we appreciate every little thing.” For a 12-year-old child to appreciate something so bad because she recognized it was bringing good, it was mind-blowing.
Over the last couple of years with lupus, our world has changed. We have shifted how we do outside and travel activities, homeschooling, what we eat, and how we appreciate life and medicine. We constantly drink water and cover up in sunscreen, and we also find ways to enjoy every day. So many people touched our lives with kindness through random presents showing up at our doorstep, to prayer chains, to hugs from our doctors. We want to pay forward this love to others. Sophia and I have been given opportunities help others going through difficult journeys whether it is with lupus or any kind of illness. We want to share our journey, and we want to be side-by-side encouraging others on through theirs.