When Wyomissing High School sweethearts Daniel Macrina and his wife Vanessa were married, their dreams of having a family and building a life together were much like any other couple starting out. Their first child, Aurora, entered their lives, a healthy and spunky little girl who, a few years later, was more than happy to learn that she would soon have a sibling.
During Vanessa’s pregnancy, they learned that something seemed unusual, so they were referred to Children’s Hospital of Philadelphia for further evaluation. Sofia Macrina was born under the watchful eye of skilled and compassionate doctors and staff at CHOP, where it was determined that she suffered from an extremely rare genetic disorder; a disorder which presented itself in countless ways, physically affecting her well-being.
Dan explained, “Sofia had an extremely rare genetic disorder, 16P 14Q, which causes severe disabilities. She was not able to swallow and had to be fed formula through a g-tube, and was also having epileptic seizures. Months after she was born, doctors determined she was immune compromised, there was a hole in her heart (atrial septal defect), and had issues with her kidneys and bladder. Sofia was hospitalized frequently for respiratory infections which usually caused an uptick in her seizure activity and other ailments. As she grew we learned that she was non-verbal and unable to walk. Every system was compromised.”
CHOP became a place of support and refuge for Sofia’s family as they navigated a life which focused on her care and where, most of the time, emergencies were a life and death situation.
“From the time she was born everyone at CHOP felt like family to us. Every time we were at the hospital, we felt like she was the most important thing to them. In this situation, nothing in the world matters but the health and safety of your child. I was so impressed to see how they worked and what our child meant to them. The Child Life Department made sure that Aurora understood what was happening on her sister’s medical journey. They played games with her and made her comfortable with her sister’s complex needs.”
Sofia passed away on June 25, 2024 at the age of eight, surrounded by her dad, mom, big sister, and many loving caregivers at CHOP. CHOP was like a second home to the Macrinas. Sofia took nine to ten trips by helicopter to Philadelphia, and 70 or 80 by ambulance. “Some of our best holidays were spent in the hospital. One of the best Christmas’s our family had was in the hospital. My niece and her husband got us a suite in a nearby hotel so we could rest and still be close to Sofia. We ordered room service for Aurora which was beyond exciting for her because it was something she never experienced and allowed things to be “normal” for a little while. I also have to mention that my employer, New Castle Lawn and Landscape, was extremely understanding and supportive through this entire journey.”
Daniel began running in 2023, during a time when Sofia was in the hospital more than out. With the stress of managing the hospital visits, Daniel felt the need to speak to someone who could provide some guidance for his mental state.
“In 2024, when Sofia was in the hospital, I spoke to David, a spiritual leader who would talk to me about the things that I was dealing with. David is a former runner, so we talked a lot about running, and he encouraged me to continue running. The running helped reduce the stress, gave me another purpose and an opportunity to get away. The nurses and staff at CHOP would encourage me to go take a run while spending time at the hospital and it really helped. Since Sofia’s passing, I’ve continued to run; it brings me back to a time when it helped to relieve all of the stress and sadness, and it helps me to remember her. We believe in how cardinals represent loved ones who have passed. I see a cardinal every time I run through the museum grounds, and it is ALWAYS in the same spot; it flies in front of me. My goal now is to help raise funds and awareness for CHOP, so that other families can be helped in the way my family was helped.”
In honor of Sofia, and to raise funds for CHOP, Daniel was selected as a charity runner for the 2025 TCS Sydney Marathon, in Sydney Australia, to be held on Sunday, August 31st.
“A typical marathon race is for the everyday runner with no outside objective; you train, register and pay, and then run the race. Then there are races like Chicago and Boston where you have to qualify and be accepted to run the race. Every major marathon gives out charity bibs that are linked to registration. Runners who receive the bibs raise money for a specific charity. CHOP receives such bibs and determines who receives them through an application process. You don’t have to worry about qualifying. I ran in the Broad Street Run last year as a charity runner. This year I applied for one of five charity bibs for the Sydney Marathon. I was selected, and one of the requirements for the bib was to raise $3,000 which allowed me to be fully guaranteed to run the marathon. I trained off-season to keep myself fit and then started a training program 16 weeks out. I run 4 times per week and log 3-20 miles per run, depending on where I am in my training regimen. I hope to make raising money for CHOP a yearly tradition. We fell in love with the people at CHOP and their mission, and I hope to continue this every year. CHOP receives bibs for the Boston Marathon, New York Marathon, Tokyo Marathon, and most all major races. It gives me a purpose and fills the huge void in my life left by the loss of Sofia. I want to maintain my physical and mental health and support an organization I genuinely believe in – in memory of Sofia.”
Daniel and Vanessa live in Wyomissing with their daughter Aurora. Daniel continues to work as a senior account executive for New Castle Lawn and Landscape. Vanessa is a teacher at the Wyomissing Hills Elementary School.
For further information and to support Daniels fundraising efforts visit:
Daniel Macrina in 2025 TCS Sydney Marathon – https://sm25.grassrootz.com/children-s-hospital-of-philadelphia/daniel-macrina
Gofundme.com – Help Daniel Run for Children’s Hospital of Philadelphia