The Challenges Of Raising A Disabled Child

By Hannah Stott, Sky News Digital Presenter

I have a beautiful six-year-old son named Curtis who lights up any room the minute he walks into it.

Born on Valentine's Day a seemingly normal baby boy, he was a younger brother to Phoebe. We settled into family life with our new addition.

However, three months in it became clear something wasn't right.

Curtis had been born with Coffin Lowry Syndrome - a rare genetic disorder. He has global delay in his development, which means he is affected both physically and mentally.

The spectrum is so huge that early on we had little idea as to how he would progress. There is no cure and no standard course of treatment.

In Curtis' case his advancements have been slow. At six he doesn't talk and his understanding is limited. He walks but not far due to the hypermobility in his joints. In many ways he is similar to a one-year-old.

Hannah Stott's son Curtis and daughter Phoebe in Dubai this month

He loves cuddles - climbing onto the laps of anyone around him, burying his head into their necks in the tightest embrace.

Curtis engages men, women, children and animals like no one I have ever seen. His affection knows no bounds - if there's a hand to grab he will search it out.

I am blessed to have this wonderful child in my life, but along with the tight hugs and endless giggles, it is tireless hard work and it isn't getting any easier.

The tragic events in New Malden, where three disabled children were found dead in their home, brought the difficult moments of the past six years flooding back.

These children almost attended the same incredible special school as Curtis, Bedelsford School in Kingston-upon-Thames.

I have been thinking of all the amazing children in Curtis' school and how I felt when I walked through its doors for the first time.

It wasn't long after my little boy was diagnosed and I was still in shock.

I was surrounded by children being challenged by difficulties I hadn't given much thought to previously - and I was there with my son.

Curtis suffers from the rare genetic disorder Coffin Lowry Syndrome

It's when I look back at those days I realise how important it was for me to have had some professional help for my state of mind.

I never did and still haven't. I recall being given a leaflet once about counselling that was available to me but I didn't get round to following it up - there was no time.

I had Curtis with all his physiotherapy, occupational therapy, hearing and eye appointments among many others to attend, a job to fit in and a daughter to look after. So I carried on with the help offered from those around me.

The borough I live in has been good when it comes to support. Curtis has transport to and from school most days. They agreed to pay for Bedelsford despite it being in a different borough.

He gets free nappies and I have a wonderful key worker who helps me with appointments and any contacts I need.

It took a long time to work out how this minefield of a system worked. When Curtis was one, a huge folder arrived through the post with details and contacts for people who may be of help when you have a disabled child.

At that time he wasn't even diagnosed, and receiving it while I was home alone was heartbreaking. I shoved it into a cupboard and still avoid it to this day.

At times the level of care shown to my feelings was non-existent.

I was concerned about how floppy Curtis was, and the first paediatrician who looked at him just bluntly told me: "I think we can all see he doesn't look like you, he needs to see a geneticist."

My mind was racing. After a few more appointments and tests I was told: "He is very delayed and I think he is going to stay that way".

I felt physically sick - the shock was unbearable.

Everyone is different but I needed such news to be delivered more carefully and gradually.

The blunt, thoughtlessness of professionals has been a common theme throughout Curtis' life.

The geneticist thought she knew what his condition was almost immediately. She told us the name, took blood and off we went to Google it at home.

If he had CLS he was going to be affected in every way for the rest of his life - reading that was tough to cope with.

Questions were running through my head. Are you sure he has it? Am I a carrier? Did I pass it on to him?

Curtis and Phoebe on their first day back to school in September 2013

The geneticist said she was "80% sure" and it was confirmed a few weeks later.

When I took the call I was alone again - trying to let it sink in as I also contemplated the fact it is a condition which is passed through the mother.

It turned out I am not a carrier - one bit of good news amongst it all.

However, the fault was in my egg and that is why Curtis will live this compromised life forever. I know it's wrong to think this, but at times I feel his care is more my responsibility than his dad's because it was my "fault".

It's impossible to plan for the future - I don't know how much more Curtis will progress and any decisions I make have to take that into account.

My marriage didn't last. But I have a wonderful partner who sees Curtis as a gift to us, a close family whose support has been unwavering and friends who prop me up on the tougher days.

People surprise me on a regular basis with their empathy but I find it hard if that turns to pity. He's my gorgeous boy and I don't want to be pitied for having him.

I am thankful for having all of them in my life and consider them to be my greatest backing. It's hard to imagine relying on this system if I was alone.

But most of all I am thankful for the personality "Curtie" has. It gets him a long way in life and I am so proud of him.

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