Hello everyone

My son zelfa got diagnosed with sotos syndrome at the age of 2 and a half and was a big shock to our family due to nobody else carrying this genetic condition. Zelfa is such a happy and loving boy but has to face his struggles everyday as do many children with severe learning difficulties and will continue in the future.

Sotos syndrome is a very rare genetic condition that effects 1 in 14000 children from birth. It is a form of a variable genetic disorder that is characterized by excessive growth both before and after the child is born.

Children with Sotos syndrome often experience development delays that may include motor and language delays ranging from mild to severe and a high proportion of individuals with sotos syndrome display autistic traits. Additional problems associated with the syndrome include scoliosis, jaundice in newborns, crossed eyes, seizures, congenital heart defects, conductive hearing loss, behavioral problems, and kidney abnormalities. Children affected by Sotos syndrome may also have a higher risk of developing particular types of tumors.

Zelfa is due to start school in September this year and as this will be a huge challenge for him. Myself and 4 of my friends have decided to take on the Yorkshire three peaks on the 23rd of may to raise some money for charity.

The Yorkshire three peaks challenge is a 24 mile hike with and elevation gain on 5200ft that takes in 3 of Yorkshire biggest peaks Pen-y-Ghent, Whernside and Ingleborough.

My charity of choice is Caudwell Children because there aim is Children and families should get the support they need from birth. Everyone, regardless of their abilities or background, should have the same opportunities. Our mission is to create a world where disabled and autistic children have the choice, opportunity, dignity and understanding they deserve.