.jpg)
On November 26th, Amy Joy Teas and our own Frank Teas, addressed the Rotary Club of Nashua regarding, their personal journey learning their infant son has Sotos syndrome. Soon after young Frankie’s birth, they felt something wasn’t right, it took many doctor appointments to get an accurate diagnosis, most physicians haven’t seen a case of the syndrome, it is reported to occur in 1 in 10,000 to 14,000 births and some experts feel it may be closer to 1 in 5,000. The disorder is characterized by the individual’s distinctive facial appearance, typically a long, narrow face, a high forehead and a small pointed chin, some have a narrow mouth palate. Affected children tend to grow quickly and are much larger than their peers, but their growth levels off and they are in the normal range as an adult.
People with Sotos can be affected by intellectual disability and can have behavioral problems such as ADHD or impulsive behaviors. The syndrome affects many areas of the body from hearing, sight, speech and language, motor skills, spine scoliosis, heart or kidney defects. The cause of the syndrome is the mutation of the NSD1 gene, which prevents the proper production of protein within the gene, it isn’t clear how a reduction of protein causes the syndrome. 95% of Sotos occur in people without any family history of the syndrome.
Their first few years of Frankie’s life have been consumed by many doctor appointments, hospital visits and the quest to learn as much as they could about the syndrome and the path that it would take them on. All the members were truly moved by their story and look forward to hearing about Frankie’s development in the years to come.