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  • Writer's pictureKelly

Our Fight with Invisible illness

Having a disability is something a person has to come to terms with and live their entire life having to accept. If you throw in an invisible disability, it opens up a whole other world full of dodgy looks from across the car park to people asking if you are sure your child has that.

Ever since Toby was a baby I just had a feeling that something wasn't quite right.

We had been to the doctor quite a few times but we kept getting told its nothing or its normal and he will grow out of it.Once Toby reached walking age it became more obvious that something was going on and, as his mother, I wanted to know what.

I contacted a different GP and explained everything in detail and thankfully, they agreed something was wrong and we had to find out what.

You see Toby could pull himself up on the furniture, he could bum shuffle across the floor, he could even crawl at some speed without any issues but once he stood up and tried to walk he would just fall back down.

He would cry with pain in his legs and back quite often and the only thing that would ease his pain would be to gently massage his legs.

When we finally got to see a paediatrician he asked so many questions and then he examined Toby and right there and then he diagnosed him with one of the worst cases of Hypermobility Syndrome he had ever seen.

Right at that moment my head was all over the place. I had never even heard of Hypermobility Syndrome, what was it, would my son be ok, will he have a normal life.

From that moment on the hospital appointments never stopped.

What is Hypermobility syndrome?

Hypermobility means that your joints are more flexible than others similar to being double jointed, which can lead to joint pain which then becomes Hypermobility Syndrome. He has spasms in his legs, pain in his back, his joints pop out of place with very little effort. He is awaiting a genetics appointment to determine if its actually the Ehlers Danlos Syndrome Hypermobile type he has, because he bruises so easily, has stretchy skin, fatigue and easy dislocations. There is no cure for Hypermobility Syndrome, Toby has to live with this condition for the rest of his life. The condition can be easily managed with the right exercises, diet and medication. You can find support and more information at

Toby was only diagnosed when he was 5 years old, we then got sent to CAMHS for further assessment because it became apparent that something else was going on with Toby. He would avoid eye contact, he wouldn't wear sweatshirts, he wasn't speaking properly, he didn't like busy places, loud noises and he became obsessed with bright lights.

This started a whole new process of testing and we were told Toby had traits of Autism but not enough to be diagnosed with Autism, they gave a diagnosis of Sensory processing disorder. Sensory processing disorder (SPD, also known as sensory integration dysfunction) is a condition in which the sensory signals received by the central nervous system do not become organised into an appropriate response. You can treat SPD with certain treatments but we don't use and of them as Toby has developed his own way of coping with everything and he has even created his very own sensory room! You can find support or more information here

Toby was then sent to see a new paediatrician and within 5 minutes of meeting him he diagnosed Toby with Tourettes syndrome. We had never even thought about TS. The media would have you believe Tourettes is all about swearing, but it is so much more, in fact the swearing part is actually called Coprolalia and he certainly doesn't have that, but we could definitely see other traits of TS in Toby, outbursts of song, swinging his legs, face pulling, clearing his throat and his favourite STEPHEN MULHERN (he loves to shout this)

Tourette syndrome (TS or simply Tourette's) is a common neuropsychiatric disorder with onset in childhood, characterised by multiple motor tics and at least one vocal (phonic) tic.

Depending on the intensity of TS medication is available to people however we turned down the medication after we were told it could cause coprolalia to develop or make his vocal tics more intense. We have since found a low sugar diet really makes a difference to Toby and we manage his TS without medication. You can find out more here

Tourettes is totally different to coprolalia and it is usually found alongside patients who have TS but not all will develop it Toby doesn't seem to have developed coprolalia (yet).

You can find out more about coprolalia here

Once Toby had his diagnoses his doctor set everything in motion for the right professionals to be involved and I have to say he has come a long long way from where he once was. So far we have regular visits with

  • Paediatrician

  • Occupational therapist

  • Physiotherapist

  • Podiatrist

  • Psychiatrist

  • Psychologist

  • Paediatric Cardiologist

  • Geneticist

  • Rheumatologist

Toby's life is far from easy, but he is perfect to us in every way. Yes I do wish I could take all of the problems that he has away. He is a very intelligent little boy, and I have no doubt that he will go on to achieve what he sets out to do. Toby likes to hide everything that he is going through and tries to make it seem like nothing, which I guess is just his way of fitting in and I agree, to look at him you would know anything is wrong. Toby also manages his conditions with Summer who is his therapy dog and is trained to calm him if his sensory issues are in overdrive again, or if he has a bad tic Summer will sit with him to try and calm and relax him. They are the best of friends.

We do have things set at school so he can take a break if he needs to. If I'm honest he very rarely takes up the offer.

I have to mention we have had quite a few items from a site called Stickman communications which has worked wonders for Toby and eased situations in which he didn't want to communicate with someone.

Parking in a disabled space or using a disabled toilet. I feel I have to mention something on this matter. If I had £1 for every time someone has either screamed at me for parking in a disabled space (Toby has a blue badge which entitles him to use the space) I would be a multimillionaire! We have had many arguments with members of the public telling Toby not to use that toilet.

The next time you see someone getting from a car that is parked in a disabled space and they "look fine" maybe think again, in fact they are not fine, maybe they are going through something that looks completely fine to others but really feels like the wave rider (time travelling ship) has landed on top of you.

Kelly x



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