Team Dylan - Stop CMV Philly

For the month of May I'm participating in the 31-Day Challenge at Children's Hospital of Philadelphia (CHOP). I've pledged to get active for 31 days to support cutting-edge research and care at CHOP!

Why I Participate
 Since her birth in May 2023, Dylan has been a CHOP frequent flyer spending at least a couple days each week with her care team at CHOP.  When Dylan was 5 days old and in the NICU at Pennsylvania Hospital (Pennsy), we were informed she tested positive for Cytomegalovirus (CMV), an insanely common virus that we had never heard about. Within hours of finding out her diagnosis, we were on the phone with the CHOP Infectious Disease team to discuss treatment options.  Within a couple days, Dylan started her 6-month course of anti-viral medications to fight her Congenital CMV. When Dylan was 2 weeks old, her first ophthalmologist identified lesions in her eyes during her second eye exam in the NICU. With Dylan’s third eye exam showing her lesions progressively getting worse and more numerous, Dylan was transferred to CHOP to be seen by CHOP's retina specialist, who ultimately diagnosed Dylan with CMV Retinitis. During her 63 days in the hospital before getting to come home for the first time, Dylan continued to rack up specialists and test results. While each test and result was an indescribable blow, we are incredibly grateful for the care Dylan received and continues to receive at CHOP. 

Unfortunately, Dylan's first stint in the hospital was not her last. A week before Dylan’s first Christmas and 6 days after completing her 6-month anti-viral treatment, Dylan was scheduled for her first ptosis repair surgery as well as a sedated eye exam. Her eye exam showed her CMV Retinitis had reactivated, and she was re-admitted to CHOP that same day to restart CMV anti-viral treatment. Santa came to visit Dylan at CHOP for her first Christmas and her big sister was happy to help open Dylan’s presents despite being in the hospital. After starting her second CMV anti-viral and getting a PICC, Dylan came back home again with the CHOP Home Care Team guiding us through IV medication. 

She has seen so many doctors and specialties that, while frustrating at times, has been helpful to her progress and understanding who Dylan is. We greatly appreciate Dylan's doctors’ patience and candor as we collectively try to come up with the best treatment plan for Dylan while in uncharted territory. Dylan's CHOP journey will continue as we continue to learn how rare Dylan is, including finding out recently about her having Baraitser-Winter Cerebrofrontofacial Syndrome.  

I want to be here to support her as long as I can, so I am going to get back into the fitness game in May to raise money and awareness about Dylan's journey. I also want to help spread the message to make sure people know what CMV, an incredibly common virus that is rarely talked about, can do to a baby and hopefully raise some money to help support care for other children at CHOP.

 How You Can Help
Consider supporting us by making a tax-deductible donation as we take on our challenge to raise money for kids at CHOP. You can also join us along with thousands of others across the country and get active during May.