Shared by cmellor
Charlotte has asked me to write a little bit about my experiences of being a father of a SVI child. I am Ellie Alice Clark’s Daddy – I think I am known to most people as Ellie’s Dad rather than Chris these days. Ellie is now 5 and we live in Cambridgeshire. Ellie was born with LCA (GUCY2D) and has been Severely Visually Impaired since birth with no useful vision.
I’ll breakdown my story into three short sections – Pre-Diagnosis, Pre-school and School!!
I can easily say that the first 2 years of Ellie’s life were the hardest period of my life. Trying to balance emotions of coming to terms of Ellie’s disability, becoming a new parent and a fostering my growing career responsibilities in a demanding job was almost impossible. It took 9 months for Ellie’s condition to be diagnosed and to receive confirmation the Ellie has no vision. During the 9 months all the specialists kept reassuring us that they thought Ellie could see up until the day that we were told that Ellie had LCA – Kate’s Birthday of all days. Ellie was extremely fractious and needed 100% of our attention in conditions that she was comfortable in – this was everywhere bar her play mat! Any sound or change of environment would spin her into huge meltdowns. We also huge addition concerns as she would not eat and kept losing weight. [Read More]