My beautiful, kind caring man, with such a gentle soul who wants to make everyone smile and wants us all to be happy.

Jared lives in a house with two other young men and he calls them Pike and Godfrey after one of his favourite TV programmes.  This is a home from home and has a wonderful care team ensuring he embraces life and lives life to the full!

Jared loves WWE, Only Fools and Horses,  Dads Army, BSB & WSB actually all motorbike racing, supports Chelsea and Crawley Town FC.

He has an aversion to the colour green, so refuses to eat or wear anything green which can be a problem.

If he gets anxious he fires you!

And he has Fragile X Syndrome and epilepsy.

Jared was 18 when he suffered his first epileptic fit.

He was out with a friend and her husband and was visiting a vintage car show.  His seizure could not be stopped and he was rushed to hospital where they had to put him into an induced coma to stop the seizure.  After 24 hours he came out of the coma but still quite poorly.

The consultant he was under had never heard of Fragile X Syndrome – why not?  A neurologist who has not heard of this disability and yet people with FXS can have epilepsy?

https://www.epilepsyresearch.org.uk/epilepsy-research-finds-link-with-fragile-x-syndrome-2/

Jared did not have another seizure until almost 18 months later, again it could not be stopped and again was rushed to hospital.

Jared continued to suffer having seizures intermittently but when he did have one they were massive with him spending time in hospital.  Even the paramedics had become used to attending to Jared at home waiting for as long as possible to see if he would come out of the seizure rather than taking him off in the ambulance as Jared now really did not like spending time in hospital – who does?

In April 2012 when Jared was at home for the weekend, he had a seizure that we could not stop.  We called the paramedics and they were with us in a very short space of time.  Unfortunately the seizure was so bad that they could not move him as his body was now shutting down and his heart was failing.  Eventually 2.5 hours later and after another paramedic team had arrived and failed to bring him out of the fit it was decided to get him to hospital.

David my second husband went in the ambulance sitting in the front with the driver (this is not usually done) whilst the other paramedic was in the back with Jared working on his heart and basically keeping him alive.

I had to ensure that Jack was happy and luckily Dan was at home so I then followed shortly afterwards in my car.

When I finally arrived at the hospital Jared was surrounded by a team of doctors and nurses working to keep him alive, I cannot describe how I was feeling, but I wanted to scream out loud please don’t let him die.  They eventually took Jared to have an MRI scan and a doctor followed with the crash bag in case his heart stopped again.

Jared was put into an induced coma and taken to intensive care, where he remained in a coma for 4 days.  Unfortunately he had now had a further complication Septicaemia http://www.gosh.nhs.uk/conditions-and-treatments/conditions-we-treat/septicaemia  On the following Tuesday they tried to bring him out of the coma but he then started fitting again so unfortunately had to put him back to sleep.  Finally late Wednesday afternoon they slowly brought him out of the coma and he finally sat up.  Slurred speech, looking like death, he did make us all laugh as he looked at the doctors and fired everyone!!

Jared was finally moved into a high dependency ward into his own private room and it was where he finally started to make a good recovery.  In one week he had lost over a stone in weight and had lost the use of his leg muscles.  He was seen by a physiotherapist who decided that H&S required him to use a walker to be able to get from his bed to the toilet.

Well that was enough to make him decide he was going to get better because he refused the walker ‘saying my nanny has one of these and I’m not old’!  He used me as a means to get around and in just a few more days made a full recovery.

During this time I cried, screamed and was so angry that this shitty disability had nearly killed him, just like his baby sister who he never got to meet.

Jared is the bravest man I have ever met, he accepts his disabilities and copes so well, and if I am having a shit day I just remind myself I am so lucky unlike my children.

He still has between 4 – 6 seizures a month, will take medication for life but NEVER complains……. well maybe when Chelsea lose a game.