Rob and Anne-Marie met at the University of Central Florida (UCF) their Junior year at the Fellowship of Christian Athletes (FCA). After running in the same circle of friends, Rob and Anne-Marie dated for two years before getting married in the summer of 2004.
Anne-Marie quit her job in 2005 to become a Realtor and she’s never looked back, becoming one of the top agents in Orlando. Rob quit his job and started his own insurance agency in 2007 and has successfully built a thriving business.
After five years of marriage, Rob and Anne-Marie tried to have a family, but were met with years of negative pregnancy results. After thirteen attempts through various means of fertility treatments, they pursued adoption.
Reagan was born in February of 2013 and their lives and hearts changed forever. Four days after Reagan was born, the results of her newborn screening were shown to be abnormal. Reagan was diagnosed with a rare genetic disorder called Glutaric Acidemia Type 1 or GA-1 for short. Because of the diagnosis, Reagan was required to be on a strict diet to limit her protein intake and is followed by a genetics team for her condition.
For 13 months, Reagan never got sick, never had a cold, the sniffles, nothing. On March 30, 2014, she was admitted to the hospital for RSV. After eight days in the hospital, Reagan was discharged but within two days was back in the hospital for something much worse.
On April 8, 2014, while playing with her Mom, Dad, and Mimi, Reagan collapsed on the floor due to a metabolic crisis, which resulted in permanent brain damage, mainly isolated to her basal ganglia. It is believed that her collapse was a result of her entire basal ganglia being damaged.
As a result of the basal ganglia being affected, Reagan had three seizures in the hospital damaging some areas in the frontal cortex of her brain. Due to Reagan’s neurological damage, she lost all of her muscle tone, the ability to sit alone, stand, walk and eat. A G-tube was placed to ensure she gets the strict amounts of formula and nutrients required due to her GA-1 diagnosis.
Rob and Anne-Marie are fighting for normal, and trusting God in where He’s leading. They continue to work with a large team of doctors and therapists to help Reagan regain skills lost. Not only that, Rob and Anne-Marie are praying for Reagan to not only meet, but also exceed milestones…this is only possible with God as her Great Physician and through continued prayer from family and friends. This blog will journal Reagan’s progress as well as Rob and Anne-Marie’s struggles and victories in this new path God has placed them on. Thank you for sharing, supporting, praying, encouraging, crying and rejoicing with our family.
See the 2014 recap video!
In 2016, Anne-Marie helped to create a special needs and inclusive ballet workshop in conjunction with Nemours, Orlando Health and the Orlando Ballet. See below video and news stories!
2017
We had a wild ride in 2017. Anne-Marie had brain surgery to remove a non-cancerous tumor. After two opinions from highly qualified neurosurgeons, the consensus was that the spot was either an aneurysm or a tumor. But going into the operating room, neither surgeon had a clear answer. Anne-Marie wrote seven blogs detailing the ordeal. Click here to read.
The Come Dance with Us program with the Orlando Ballet entered its second year and continues to flourish with waiting lists of families wanting to participate. We hope to grow the program to longer workshops and are in talks with the Orlando Ballet on how to effectively do that. Below are clips from this past year! You can see Reagan’s continued progress in the video and the impact this program is having on other families within the Orlando community.
