Crosby’s Cure by Sophia Phillips

In 2020, my husband, Ryan, and I received the shocking news that our first and only child, Crosby, has an ultra-rare neurodevelopmental condition called FoxG1 syndrome—so rare that only 700 children in the WORLD have it. The outcome is severe. Desperate to fight and change our son’s future, we hit the ground running to find the best researchers and scientists to develop a cure.

In November 2019, Crosby James Phillips was born full-term, naturally and with no complications. Shortly after Crosby’s birth, it was obvious that he was going to be a challenging baby. He rarely slept and cried inconsolably for days. Crosby would lay in his crib at night, kicking his legs and moving his arms for many hours. He continued to have crossed eyes and, at six months old, could not look at me, smile, or roll. We spent countless hours on the internet trying to figure out what was wrong with our son. After months of anxiety and watching Crosby suffer through evaluations, MRI’s, EEG’s, and blood tests, we were told, “your son has FoxG1 syndrome and will not walk, talk, or be able to care for himself.” 

How did this happen to us? A genetic condition, but we don’t have anything in our family? What did we do wrong? What will our son be like? How are we going to survive this? 

After searching the internet, we learned more. FoxG1 syndrome is the result of a genetic mutation impacting the FoxG1 gene responsible for early brain development. FoxG1 syndrome results in severe intellectual disability, and most children cannot sit, walk, talk, or take care of their basic needs. Children with FoxG1 syndrome often require a feeding tube and develop a debilitating form of epilepsy. 

Our world was crushed. For days I struggled to look at Crosby without crying. How did this happen to my sweet boy? To learn that your child will not have an opportunity to live the life they’ve been given is impossible to describe. An innocent baby and healthy parents…a fluke thing. How is this fair? I questioned my relationship with God more than ever and questioned the world I live in. Billions of dollars are spent every year on amazon purchases, film making, and sporting events…yet here is my son suffering from a lifelong condition that CAN BE CURED with a fraction of the expense. I would not wish this on my worst enemy. Overwhelmed with devastation and disbelief, it was hard to imagine living another day. 

After a day or two of practically being unable to breathe, we jumped into action. We became immersed in the world of genetics and gene therapy so we could have technical conversations with experts. We spent every waking hour contacting world-renowned researchers to tell our story and create a team to find Crosby’s Cure. We joined the FoxG1 Research Foundation and are making strides toward a therapy to improve our children’s quality of life. With over 2 million dollars raised and contracts with some of the most prestigious labs, we are hopeful for a scientific breakthrough.

Although I have high hopes, I am still accepting the harsh reality that I am the mom of a child with a severe disability. The days are long and the nights are longer; I cry often. Crosby is one year old and struggles with a severe movement disorder that causes dramatic sleep disturbances (often as few as 2-4 hours of sleep a night). He is unable to reach for toys and has a visual impairment impacting his ability to interact with the world around him. He cannot roll or sit without assistance and has severe epilepsy. Despite his limitations, Crosby is the most beautiful boy with a kind soul. He holds my whole heart, and I will spend my entire life caring for him and finding ways to enjoy every moment we have together. 

Guest post by Sophia Phillips, FoxG1 Advocate, and Rare Mama to Crosby

Crosby’s Cure