Ahna came into this world on Christmas Day , 2013. She weighed only 1 pound and was just 12 inches long. Her lungs were not completely developed and she required the assistance of a ventilator to help her breathe. She spent her first six months in the Cincinnati Children’s Hospital. She received a tracheostomy at 3 months old and we spent the next several months learning to care for her and her new airway.
To date, Ahna is 5 years old and has had about 53 surgical procedures. She has a bronchoscopy every 3-6 months to check the integrity of her airway since her reconstruction. This process will continue until she matures.
In May 2016, Ahna underwent major airway reconstruction surgery, reversing the need for the trach; however, the challenges for our young child never dwindled.
In January of 2019 she faced a second airway reconstruction surgery because of continued Subglottic Stenosis due to the long term intubation at birth. These procedures require long hospitalizations. We were away from home with our daughter at Cincinnati Children’s Hospital for 4 weeks during the second reconstruction. We slept in recliners in our daughter’s room. The hospital does not feed parents so we were responsible for providing all of our own meal. We live 1.5 hours from the hospital; however, after following discharge, the hospital requires families to stay in town for a week in the event that there is any type of breathing emergency. The money that was gifted to us by the Caroline Caprio Scholarship & Giving Fund helped us immensely by relieving the financial pressures of having to stay away from home, eat and find lodging in Cincinnati. This subsequently allowed us to focus on caring for our daughter and eliminated so much stress. We will forever be grateful to the foundation for their help!
In August of 2017, I lost my mother due to a stage 4 gleobalstoma. One month later I met Caroline Caprio, introduced to me as the “survivor”. Upon our first meeting knowing prior of my situation, our introductions to each other resulted in an immediate hug. I recall crying but also feeling safe as if someone understood my roller-coaster of emotions. One of the reasons I feel she was placed in my life from god is because I could finally understand my mother’s behavior towards the end of her life.
Conversations on the phone led to luncheons and crying sessions.
Having gone through similar conditions and treatments, Caroline was able to explain, comfort and help me understand more of of this vicious disease than any doctor could. As our friendship grows, she has introduced me to people who also need my support and prayers.
Her dedication and determination for the foundation has also encouraged me as a victim’s daughter to participate and become more involved.
We wanted to thank you for your kindness and generosity to our family.
One year ago, Shannon was diagnosed with a low grade glioma in her cerebellum and a brain malformation called chiari malformation. Even though I am a nurse with a medical background, I am a mom first and was scared. A mutual friend connected you to me, and you did not hesitate to reach out immediately.
Just being able to talk to someone was so helpful and I knew I made a friend for life. You always checked in on us and offered support. Then to our surprise, almost a year to the day, you offered my family a day on your boat. A day to relax, swim, fish, have fun, and just enjoy each other.
That is exactly what we did. The day was beautiful. Shannon caught a fish, jumped off the boat, and enjoyed being with her family. We put our worries aside and just had fun.
She remains on watch and wait with MRI’s and we are so grateful for the good outcome thus far.
Thank you for helping others when they need it the most. 😊❤️
Tara, Bob, Shannon, And Family
Julia was diagnosed with osteosarcoma. She is fierce, smart and loves unicorns; she is our hero. The foundation presented Julia with with a unicorn bear for her to sleep with!
Michaela has a brain tumor. Her mom Meredith writes, "You have been a fighting force in raising money, and a friend to all of those who have needed you in the brain tumor community."