Daniel Macrina and his wife Vanessa, high school sweethearts from Wyomissing, began their married life dreaming of a beautiful family and a shared future.
The arrival of their first child, a spirited daughter named Aurora, filled their home with joy.
However, the excitement of welcoming a sibling soon turned into a challenging journey when Sofia was born with an extremely rare genetic disorder, 16P 14Q, which presented numerous physical and health challenges.
“Sofia had an extremely rare genetic disorder, 16P 14Q, which causes severe disabilities,” Daniel explained.
“She was not able to swallow and had to be fed formula through a g-tube, and was also having epileptic seizures.
Months after her birth, doctors discovered she was immune compromised, diagnosed her with a hole in her heart (atrial septal defect), and revealed issues with her kidneys and bladder.
Sofia frequently required hospitalization for respiratory infections, which often escalated her seizures and other complications.
As she grew, it became apparent that she was non-verbal and unable to walk, with her health affecting nearly every bodily system.
Despite these hardships, Children’s Hospital of Philadelphia (CHOP) became a sanctuary for the Macrina family, offering support and care during their most difficult times.
“From the time she was born, everyone at CHOP felt like family to us,” Daniel remarked.
“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 ensured that Aurora understood what was happening with her sister’s medical journey by playing games with her and making her feel comfortable with Sofia’s complex needs.”
Tragically, Sofia passed away on June 25, 2024, at the tender age of eight, surrounded by her loved ones at CHOP.
The hospital had become a second home for the Macrinas, who made countless trips to Philadelphia for Sofia’s care—between nine to ten by helicopter and 70 to 80 by ambulance.
They even celebrated some of their best holidays there, with one memorable Christmas being spent within the hospital.
Daniel shared, “One of the best Christmases our family had was in the hospital.
My niece and her husband got us a suite in a nearby hotel, so we could rest while still being close to Sofia.
We ordered room service for Aurora, which was beyond exciting for her, allowing things to feel ‘normal’ for a little while.
My employer, New Castle Lawn and Landscape, was also extremely understanding and supportive throughout this entire journey.”
Amid the chaos and stress of hospital visits, Daniel found solace in running, which he began in 2023 while Sofia was frequently hospitalized.
Understanding the importance of mental health, he sought the support of David, a spiritual leader who shared his experiences and encouraged Daniel to continue running.
“When Sofia was in the hospital in 2024, I spoke to David, who would talk to me about what I was dealing with.
He encouraged me to maintain my running as a way to cope.
Running helped alleviate my stress and gave me a sense of purpose during those tough times.
The nurses and staff at CHOP would often encourage me to take a run, and it was incredibly therapeutic.
Since Sofia’s passing, I’ve continued to run, and it reminds me of the time when it helped relieve stress and sadness.
We believe that cardinals represent loved ones who have passed, and I always see one when I run through the museum grounds—always in the same spot, flying right in front of me.
Now, my goal is to raise funds and awareness for CHOP, so other families can receive the same help we did.”
In honor of Sofia and to support CHOP, Daniel has been selected as a charity runner for the 2025 TCS Sydney Marathon, which will take place on August 31, 2025.
“A typical marathon is for everyday runners with no outside objectives; you just train, register, and pay to run the race,” Daniel explained.
“But there are major marathons like Chicago and Boston that require qualifying.
Every major marathon offers charity bibs that runners can receive to raise money for specific charities.
CHOP receives such bibs and chooses who gets them through an application process.
I participated in the Broad Street Run last year as a charity runner, and this year, I applied for a charity bib for the Sydney Marathon and was selected.
One of the requirements for the bib was to raise $3,000 to guarantee my entry into the marathon.
I trained during the off-season to stay fit, and then started my 16-week training program.
I run four times a week, covering between 3 and 20 miles per run, depending on my training cycle.
I hope to make raising money for CHOP an annual tradition, as we’ve grown to love the people at CHOP and their mission.
The organization receives charity bibs for various major races, including the Boston Marathon, New York Marathon, and Tokyo Marathon.
This gives me a purpose and helps fill the void left by Sofia’s loss.
I want to maintain my physical and mental health while supporting an organization I genuinely believe in, all in memory of Sofia.”
Daniel and Vanessa continue to reside in Wyomissing with their daughter Aurora.
Daniel serves as a senior account executive for New Castle Lawn and Landscape, while Vanessa is a dedicated teacher at Wyomissing Hills Elementary School.
For those interested in supporting Daniel’s fundraising efforts, additional information can be found at the following link:
Daniel Macrina in the 2025 TCS Sydney Marathon – https://sm25.grassrootz.com/children-s-hospital-of-philadelphia/daniel-macrina
image source from：berksweekly
