Photography by Christi Allen Curtis Photography
Meet Addison. She is Beauty Revived.
We knew Addison was something special the very day she was born. Little did we know the journey she would take us on, but we could not be more grateful for the ride.
Addi was very sick as a baby. Starting at six months old, she became very ill and spent days and sometimes weeks in the hospital. She developed problems causing severe rash and breathing issues that left doctors puzzled as to what was causing it. After multiple hospital stays to recover from several bouts of pneumonia and no closer to an answer, we travelled to a hospital in Denver seeking help. It was discovered there that Addi was silently aspirating fluid into her lungs. It was tough hearing that Addi would need a feeding tube to prevent further issues from developing, like a lung transplant if this went unresolved.
We returned to Florida to meet with the neurologist who decided to do an MRI of her head. It was discovered that Addi had Chiari Malformation, a defect where her brain was squeezing through the base of her skull causing a pressure build-up in her brain and spinal canal.
We were in total shock.
Within a week of discovery, Addi was in for her first brain surgery and had two more over the next year. During recovery from one of her surgeries, she became extremely ill and was left clinging to life during an eight-week hospital stay. Through these tough times, our family learned that Addi was stronger than most as her smile never left her face.
Just when we thought we were in the clear, Addi started to get daily fevers, belly pain and an unwelcomed return of severe rashes. It seemed like we were just adding more pieces to the puzzle. We were, again, playing a guessing game to try to find an answer as we continued to add to her medical resume. Years went by and it wasn’t until Addi was 5 that we finally had the answer we were searching for.
It was a day of both relief and mystery.
Addi was diagnosed with TRAPS, a periodic fever syndrome with no definitive treatment and no cure. It was told to us that Addi was the only one in the world known to have this particular mutation and the search was on to find a treatment that would work. It was truly uncharted territory as most of the treatments proposed were going to be trial and error. She was patient as we went to appointments almost every day trying to develop a treatment that would work long-term.
Many medications failed, yet Addi maintained her fighting spirit. She was truly a warrior. She endured painful injections daily, but took them like a champ. We were afraid of the damage it would do to Addi’s body and organs if we couldn’t find the right treatment. Our family was truly learning what it meant to have courage and be brave. So, we continued to push through and finally found the medication that works! Addi receives this medicine every other week, through a mediport placed in her chest to prevent flare ups from TRAPS.
Though she is little, she certainly reminds us each day about compassion.
What is so beautiful about Addi is her giving spirit. After all that she has been through, she cares so deeply about others. During one of Addi’s infusions, she noticed that the prize closet, where kids pick a toy after their treatment, was nearly empty. She decided to take action. For her birthday, she asked her friends to bring toys for the prize closet instead of birthday gifts. This was truly remarkable! She received so much support from her family, friends and community that the donations poured in. Soon enough, Addi was running her own non-profit organization called Sending Smiles, collecting donations to stock the prize closet at the hospital so it never goes empty again. Within 5 weeks, Addi collected over 1,500 toys to donate at Christmas time! We couldn’t be prouder!
Addi has been interviewed by several news stations for what she has accomplished so far. She was featured as a Hometown Hero for the local news and even honored by the Tampa Bay Lightning as a Community Hero of Tomorrow! As a huge Lightning fan, Addi was more than happy to accept the award and it was an incredible experience for her.
Looking at Addi, you would never know the journey she has been on. She has never let appointments, surgeries, or scars define who she is. Her resilience shines through and she has become such an inspiration to us all. It’s amazing what a difference one person can make in this world. It’s even more amazing that she is only 9 years old. Addi has changed our lives forever.
About the Photographer
Christi Curtis is a Tampa Fl based photographer with a passion for capturing children and families! Her true passion is Underwater, she has been capturing the joy of childhood underwater for the past 9 years. She is a lover of all things photography, vintage cameras, coffee, her 2 beautiful children & lovely light late in the afternoon.