The Child Growth Foundation (CGF) is a leading UK charity which supports families, adults, and children with rare growth conditions such as SHOX deficiency, Silver Russell Syndrome, and Sotos syndrome. According to the Bishop’s Stratford Independent, a Sawbridgeworth father is now participating in the Virgin Money London Marathon to raise money for the CGF. Anthony Leyton believes in the charity’s mission – especially as his own son, Ivo, was diagnosed with Sotos syndrome.

Raising Money for CGF

The Leyton family consists of Anthony, his wife Jacqueline, and children Ivo, Jocelyn, Ezra, and Caia. Unfortunately, due to COVID-19 restrictions, the entire family cannot come watch Anthony during his race. However, they know that he will achieve whatever he puts his mind to during the 26.2-mile run.

Currently, Anthony aims to raise £2,000 (roughly $2,725) for the CGF. After Ivo was diagnosed with Sotos syndrome, Anthony says that the CGF’s help was invaluable. In addition to offering support and education, Anthony says that the CGF also helps fund research and raise awareness for various conditions. Thus, this is his opportunity to give back. He underwent a similar endeavor in 2019, raising £2,300 (roughly $3,134) for the CGF.

As Anthony said, the charity has always supported him, his family, and many others in need. Now, he hopes that his fundraising opportunity will provide some support to the CGF, especially during such difficult times.

Want to support the Leyton family cause and help raise funds for the Child Growth Foundation? Learn more on how you can contribute here.

Sotos Syndrome

First described in 1964, Sotos syndrome is a rare genetic disorder characterized by excessive physical growth during childhood. NSD1 gene mutations, inherited in an autosomal dominant pattern, cause Sotos syndrome. Despite often being larger at birth, and taller with larger heads during childhood and adolescence, many people with Sotos syndrome are average height in adulthood. Symptoms and characteristics associated with this disorder include:

• A long narrow face with a high forehead
• Hypertelorism (abnormally long distance between the eyes)
• Hypotonia (low muscle tone)
• Flushed cheeks
• Clumsiness
• Down-slanting palpebral fissures (outside corners of the eyes which point downward)
• Small, pointed chin
• Developmental delays
• Speech impairments and delays
• Irritability, aggression, or other behavioral issues
• Macrocrania (large skull) without megalencephaly (large brain)
• High arched palate in the mouth
• Disproportionately large hands and feed
• Premature tooth eruption

Learn more about Sotos syndrome.