Lanita’s Story: FoxG1

Lanita’s pregnancy began and ended just like every other normal beginning to a baby’s life. She was a science teacher at Madisonville North Hopkins High School, whose curriculum included genetics. She was married to her love, Eric, and life seemed to be everything she could have asked for. Ryder was born healthy and beautiful and the next few months were filled with the normal moments of having a newborn.

Lanita and Eric Copas

Lanita and Eric Copas

At the end of his seventh month Ryder was a bit behind other kids his age. For example, Ryder didn’t sit up unassisted when he should have. At that point the doctors weren’t concerned and neither was Lanita. One Monday, however, she noticed that Ryder’s eyes would flicker to the left and he would giggle. That Thursday she called the doctor to mention the strange behavior and was told to immediately bring Ryder in to be seen. The doctor reported he appeared to be fine but ordered an EEG to be safe.

That Thursday began a whirlwind journey of medical tests and trips to doctors hundreds of miles apart in every direction, ultimately culminating in a diagnosis for Ryder. Genetic testing showed that Ryder is a FoxG1 kid.

The FoxG1 mutation is not widely documented or commonly understood even in the medical community. In fact, according to Ryder’s geneticist, he was only the eleventh child ever diagnosed with the rare genetic mutation. Lanita soon discovered her son was part of an elite community scattered throughout the world with no known organized support system and no one source of information on how to deal with the astounding number of issues associated with Ryder’s new diagnosis.

The FoxG1 gene is responsible for making a particular protein that plays a vital role in brain development before birth. This protein, called forkhead box G1, is critical in the development of a part of the embryonic brain called the telencephalon. The telencephalon eventually develops into large and critical portions of the brain that control voluntary activity, language, sensory perception, learning and memory. (1)

FoxG1 Syndrome is caused by mutations in the FoxG1 gene. Many times the syndrome is a result of a deletion of that gene. The deletion causes a disruption in the function of the forkhead box G1 protein, which causes the brain to develop abnormally. As a FoxG1 Syndrome child develops, he or she will experience a variety of symptoms: inconsolable crying during the first year of life, delayed gross and fine motor skills, teeth grinding, limited purposeful use of the hands, involuntary muscle movements, a smaller head size, seizures, spontaneous laughter, higher than average pain tolerance, increased susceptibility to illness, constipation, sleep disturbances, swallowing issues, nonverbal or minimal word approximations, temperature regulation issues, small hands and feet, an exceptional love of water and music, and more. Each child will have a different combination of these and more issues, depending on the specific mutation of the FoxG1 gene. (2)

Ryder is unique even among his Foxy friends. Instead of a deletion of the FoxG1 gene, Ryder has a duplication, which means the entire gene is duplicated throughout his DNA. That diagnosis singled Ryder out as the only known child in the world to be born with this already rare genetic mutation.
Ryder Copas
Ryder Copas

It took a lot of research on Lanita’s part to begin to understand her son’s condition. Since no one knew much about FoxG1 Syndrome, Lanita began using her own knowledge and understanding of genetics to research and reach out to every single doctor, researcher and professor who published anything or had any connection to FoxG1 research. A few months after Ryder’s diagnosis, Lanita found a couple of other moms on a website and blog called Circle of Moms who also had FoxG1 children. Since then those moms have combined the strength of their knowledge and resources and begun the International FoxG1 Foundation (2). This website is a source of information and support for those who find themselves living with the miracle of a Foxy child.

For Lanita, there have been many moments of startling beauty set against the backdrop of everyday struggles and difficulties. Since Ryder was the only child in the world at the time of his birth and diagnosis with a duplication mutation of FoxG1, no one knew what his abilities and disabilities would be. Originally, Lanita and Eric were told that Ryder would never walk, talk, or communicate with them. They prepared for the worst and fought against that prognosis. They fought against Ryder’s delayed motor skills, delayed speech, and the major sensory issues he struggled with. They remained patient, continuously working with their son and encouraging him to achieve more than what the doctors said he would. And he did. When other children learned to walk, Ryder learned to crawl. When other children were mastering language, Ryder mastered what the doctors said he wouldn’t. At nineteen months, Ryder walked independently and never looked back.

Due to his early diagnosis, Ryder was able to enroll in Tennessee’s Early Intervention program where he received speech and occupational therapy. Within a year he phased out of the program due to his age, but he still goes to private speech and occupational therapy to continue developing his ability to communicate as well as the coping mechanisms necessary to reconcile the outside world with what happens in his brain. Since Ryder’s birth there has been one more child born with the same FoxG1 duplication that Ryder possesses. However, that child is younger than Ryder and therefore, Ryder carries the honor of being the trendsetter for the world, blowing past doctors’ best guesses at what he will be able to do. He has demolished their expectations and continues to grow and thrive.

Each milestone he reaches is cause for celebration for his parents. Lanita says she worked diligently on small things with Ryder. Over and over again she encouraged him to stack stars on a ring and push the buttons and twist the circles on a toy that makes animals pop up. He couldn’t complete those simple tasks for a long time. But persistence paid off and one day, his skills caught up with her determination and he did it. Other milestones include holding his own bottle, feeding himself with a spoon, saying mama and daddy and I love you, using the potty, holding a pencil, recognizing numbers and letters, and her very favorite, singing the blessing at mealtimes: “Going from being told he would never talk to hearing him say, ‘God is great, God is good,’ just melts my heart.”

Perhaps Ryder’s largest issue is his most public one. Ryder does his best when his life goes by a normal routine. When things go according to his understanding and expectations, he thrives. But when his routine is upset or his expectations of an activity are not met, his brain reacts in a big, explosive way. This also happens when his senses are overloaded with too much noise, light, or activity. When these things happen, Lanita calls his response a complete meltdown as Ryder struggles to process the break between his expectations and his reality. There is no amount of firm discipline, comforting or talking that will fix the situation. Lanita and Eric have learned that Ryder has to be in the middle of the resulting explosive emotions and physical responses until his brain resets. Sometimes it lasts twenty minutes. And when finally he has screamed it out, he reaches out to them for comfort and puts himself back together.

For Lanita, this has been the hardest and most personal issue to face. Because Ryder looks normal, people who don’t know him don’t understand that when he has these meltdowns in public, it is due to the way his brain is or isn’t processing a situation and the resulting emotion. They most often decide amongst themselves that Ryder’s behavior is a direct result of bad parenting and make it a point to let their disgust be known to Lanita and Eric. They make comments loudly enough to be heard by everyone around them, including Lanita and Eric. These strangers who do not know Ryder or his specific situation glare, point, roll their eyes, and generally ostracize Ryder while he deals with his meltdown. It is an emotional point for Lanita, who wishes people could see her son as he is: a unique child who has already conquered insurmountable odds and works daily to be who God designed him to be, rather than what he was diagnosed to be.

Other sensory processing issues Ryder deals with include brushing his teeth, eating oddly textured foods like chips or ice cream, or being kissed on his face. At one point, he absolutely could not handle any of those things. But occupational therapy has helped him overcome some of those sensory issues and helped Lanita and Eric learn how to help Ryder process the things that his brain cannot automatically comprehend. One of the things that has helped the most is using the Wilbarger Brushing Protocol, which is a technique that involves stimulating the whole body, beginning with arms and moving down the body with a sensory brush. The technique, which is used by trained therapists or parents who have been trained, allows the brain to become accustomed to touch before processing touch in the most sensitive areas. This brushing protocol has helped Ryder tremendously and has allowed Lanita and Eric to more easily brush his teeth, trim his nails, cut his hair, and finally kiss his face.

Lanita, who has been a Christian since age thirteen, has never doubted God’s presence in Ryder’s life and in his struggles. She has known since his diagnosis that God has a plan for her son and even when it is very difficult, she trusts the unseen, uncreated One that created her son just as he is and walks with him each day. She has seen the hand of God act in a variety of ways on Ryder’s behalf as well as her family’s. She believes God’s grace enabled them to sell their house in Kentucky in twenty days, allowing her husband to accept a new job near her hometown in Tennessee within a month of Ryder’s diagnosis. Being surrounded by family during such a tumultuous time period undergirded Lanita with the strength and support she needed as she fought for Ryder and the milestones he eventually achieved. She has also seen God’s love for her poured out in the people around her, from family and friends, to home health nurses and other medical professionals. The Body of Christ rising up to support and love Ryder and his family has meant the world to Lanita.

Last year Ryder became a big brother to Asa Glenn, named for his grandfather who went Home before his namesake’s birthday last year. It was a big decision for Lanita and Eric to decide to have another child. The fear that another genetic mutation could occur stared them in the face. Doctors assured them there was only a 1% chance of the same genetic mutation occurring. Since neither Lanita nor Eric carry the mutation themselves, it would have to result from gonadal mosaicism. However, because of Lanita’s new Foxy family with the International FoxG1 Foundation, she knows that 1% doesn’t tell the whole story. She knows four families that have multiple children with the same mutation. Lanita and Eric faced their fear, however, with faith and with the knowledge that they knew the signs to look for and how to live with a unique child in a world that doesn’t understand his special brand of unique. Asa, however, was born with no genetic abnormalities and is growing up alongside his big brother, completely unaware there is a difference between the two of them at all.
Ryder and Asa

Since the International FoxG1 Foundation was created for information and support for Foxy families, Lanita understands there are now at least 120 documented FoxG1 children in the world. Each child’s expression of FoxG1 syndrome is different due to the precise mutation of the gene in their body. But Lanita encourages parents of Foxy children and all those in support roles to reach out to one another to better understand ongoing research about this rare condition and how it affects daily life for each child. When facing a diagnosis, Lanita’s best advice is to research beyond what the doctor says in order to fully grasp the big picture and find others who understand and are willing to support, even if it’s just a virtual hug on a blog for people facing the same issues you are. Ryder is in a class by himself and is blazing a trail geneticists and doctors can follow to further their own understanding of the miracles of these Foxy children. Each day is part challenge, part miracle, in which the small moments are celebrated alongside the big ones, and the gift of life is not taken for granted.

If you would like to learn more about FoxG1 children or how to support the International FoxG1 Foundation, please visit www.foxg1.com.
FoxG1

(1) http://ghr.nlm.nih.gov/condition/foxg1-syndrome
(2) www.foxg1.com

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2 replies
  1. Misty Cotton says:

    just a comment about the brushing technique, you cant stress “trained therapist” enough! High Five to the Copas for finding their own network of families and creating an organization for other families!

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