Patrick and Farah Armstrong have teamed up with Jed and Hannah English to host this fun 4-man scramble tournament. Proceeds from the tournament will go to the National CMV Foundation, an organization very important to the Armstrong and English families.
The Armstrongs' Story:
We had never heard of CMV until one hour after our daughter, Madeline Leigh, was born on Jan. 31, 2014. There were no indications of a problem during my pregnancy and therefore we were shocked to learn that I had contracted a PREVENTABLE virus during my pregnancy that was so devastating to our baby. Maddie suffered hearing loss, brain calcifications, liver and spleen damage, and her cerebellum (the portion of the brain that controls coordinated movement) had only formed 10%. Maddie spent ten days in the NICU before we learned the devastating news that she was terminal. We made the gut-wrenching decision to bring her home on hospice care and Maddie passed away after two days at home. She was only 12 days old. We are passionate about raising awareness of congenital CMV in hopes of saving other families the heartache that we have endured.
The Englishs' story:
I had a routine and seemingly healthy pregnancy, so when Evan was born at full term weighing only 5 pounds, we were afraid something was wrong. Evan developed slight neutropenia and a small petechia rash soon after birth, and the hospital admitted her to the NICU for monitoring because they were unsure of the cause. She was monitored in the NICU for 6 days, and she failed four hearing screens in her right ear, yet each time we were reassured that it was likely due to fluid from birth. On the 6th day, they discharged her with the assurance that she was fine. It was only when we followed up with our pediatrician two days later that the possibility of CMV was ever mentioned. To say we were terrified is an understatement, but we were also angry that we were never made aware of this preventable virus and the devastation it can cause. Evan, now seven months old, was diagnosed with cCMV at two weeks old. She was immediately started on a strong antiviral that she continues to take, and is a candidate to receive a cochlear implant around her 1st birthday. This journey has been incredibly difficult and we still have unknowns ahead of us, but we are driven to fight for awareness, education, and change.
While the Armstrong and English families are the organizers for this event - it's really about the entire CMV family. Each of the tournament's 18 holes will be dedicated to a CMV family. While each family may not be able to join us on the day, they will be spreading CMV awareness and fundraising to support this event within their own community.