In November of 2014, when Eyston was 7 months old, he went to live with his grandparents after being removed from his mother’s care for medical neglect. He was supposed to have cranial surgery at 3 months old to open the sagittal suture and correct Craniosynostosis, but instead had this procedure completed at 9 months old. Originally, Eyston was diagnosed in utero with Dandy Walker Syndrome. During a visit with his neurologist, she had expressed that she did not think Eyston had Dandy Walker Syndrome, after looking over X-Rays from his early months. An MRI was performed to prove her assumption correct. At this point, Eyston was sent to a genetics doctor. In January of 2017, samples from Eyston’s father and brother were submitted for variant segregation analysis by whole exome sequencing. Results concluded that neither his father nor brother harbored the R525Q variant in the FOXP1 gene. It is unknown if the R525Q variant was maternally inherited or occurred de novo, as a maternal specimen was not available for analysis. Eyston was diagnosed with FOXP 1 in March 2017.
Eyston has had a tough road. From cranial surgery to wearing hand splints to keep from clenching his hands, life always was a little harder for him. He has worn a soft helmet for up to 6 years, due to poor balance and frequent falls. He wore ankle braces to help with ankle stability. Eyston never crawled, instead he would roll from one side of the room to the other. He also had a medical walker to assist and support him. He was able to walk on his own around 27 months old. At a young age, we had to use a “Brushing Protocol” with Eyston, as well as wearing a weighted vest to help with attention, balance, and body awareness. He loved sensory stimulation, but also sought and needed oral stimulation. Eyston did not start speaking until around age 3, and prior to that he would use pictures and sign language to communicate his needs.
Eyston loves being outside, but he likes to wander off which is a big concern. He is very energetic, compulsive, and has a lot of obsessions, such as small toys, stuffed animals, etc. He is also very sensitive to loud noises and jumps when he hears them. Eyston has faced many challenges at such a young age, but you would never know it. At the age of 6 years old, he is such a happy child and never complains. He brings so much joy to our lives and everyone around him.
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