By Chris Clarke

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 was 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.

As well as family support, we had great respite when Ellie attended her local Nursery.  She has amazing support from an amazing bunch of people.  This enabled Kate to take on a big career change from a Mechanical Design Engineer to a Trainee Habilitation Specialist, soon to be qualified.  We don’t do things by half!  With Kate studying, my career growing and Ellie more comfortable her time from 2.5-4 was really enjoyable. 

Ellie bloomed into a happy, intelligent and funny little girl, thriving on spending time with adults.  Of course there were still issues to work through.  Her eye poking, eating, mobility, independence etc …  Then we decided to add to the mix with Keira, our now 18 month old daughter.  With a new sister and school looming, Ellie faced a lot of change to what she had got used to.  When Keira came along Ellie adapted amazingly well, especially given the extra challenges she brought, and still does with her allergies that we had to give a lot of our attention.  Then came school …

Ellie stared school in September 2015 after she had just turned 5, she is the oldest in her class.  Ellie attends a lovely quaint village school about 5 miles from where we live.  Unfortunately, we have had a huge number of challenges that we have had to face and we had to make the very hard decision to move Ellie to a new school next September which again has caused a huge amount of stress on all of the family.

Most, if not all, of my ‘spare’ time has been exclusively working to resolve the challenges we have faced to minimise impact on Ellie who has been extremely stressed

So there my very high level story since becoming a father.  I can honestly say that Ellie has change my life completely … for the better.  Ellie has made me look at the world in a different way and I am a different person to who I was 6 years ago.  Despite all the adversity and continuous battels to make sure Ellie getting support she needs and deserves, I am a far more positive person. 

Life is in perspective and what used to be important is no longer so.  Her influence has also changed me as a professional, making it easier to keep decisions and leadership in perspective. 

Ellie is an amazing little person, and I have no doubt that she will make an impact on the world as she becomes more independent.  I am thankful to have such an amazing little girl who has turned my world upside down and despite all the recent stress am positive that Ellie is going to thrive and continue to grow.

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