To my beautiful boy, You’re 1 in 100,000 in every way

My beautiful little boy was diagnosed with Aniridia, a rare genetic eye condition (1 in 100,000), at 6 weeks’ old. In simple terms this means that he was born without irises and with an under-developed fovea. The condition means that his sight is currently moderately impaired. However, due to the progressive nature of the condition and […]

Pathways to Support

In law, a disabled child is considered a ‘child in need’ and as such a duty is placed upon the Local Authority to provide services and support to meet their needs. There are several routes for accessing this support and these should be explained to you. You should be offered an assessment of your child’s […]

“I am you, and you are me”

Full of Life has often been described by parents as an extended family, a safe place where families can share in their journey with others who have an unspoken understanding, who have walked that path and felt the highs and lows. This poem written by Morgan Turpin, a mother of a child with Dravet Syndrome, […]