"This is the first time I've sat down and written about Boris' story and his condition and thinking about it, it brings back a sick feeling in the pit of my stomach. Most people won't have heard of Tuberous sclerosis or TS as it's commonly abbreviated to. It's a condition that as advances in medicine, MRI imaging and Gene testing develop will become more widely diagnosed.

I remember Boris's birth being stressful as Liz had to be rushed to the RUH by ambulance right at the last minute of her labour at Trowbridge hospital due to complications so when Boris was finally delivered it was a huge relief and as any first time parent will tell you a moment you'll never forget. When holding Boris at the hospital I noticed his eye would flicker involuntarily and after witnessing it a few times flagged it to a midwife who said it could just be a reflex thing so we went home and began life with our baby boy as normal. The flickering and involuntary blinking of his eyes continued so we took him back to our local hospital who on witnessing it sent us straight to the RUH NICU for review.

Boris was given a brain scan and immediately put on anti epileptic medication. During the week long stay in NICU we were in a trance as a lot of your worst fears as parents become a reality. Along with our close family we were taken into a side room by a specialist who said the scan results were bad news and that Boris had tumours covering large parts of his brain that were untreatable the main initial side effect being aggressive epilepsy.

We were sent home with a couple of anti epileptic medications to begin a life we were completely unprepared for. With Boris having up to 350 epileptic fits a day we had to set up a 24hr monitoring system between us and close family, it meant constant monitoring of Boris and when one of his fits started we had a stop watch to time them and note it down. If a fit lasted longer than 5 minutes we had an emergency medication to deliver into his cheek if this medication did not stop the fit we then had to call an ambulance. I remember we tried to act normally and I recall taking him for a walk in his buggy when a family friend came over and said how great it was that we were home, you try to put on a brave face but whilst she was talking to me Boris was having an epileptic fit in the pram but she hadn't noticed.

It was like being in a twilight zone and it is one of those things you think that'll never happen to you. We were home for about 10 days when one of his fits became untreatable and we called an ambulance that quickly escalated to an air ambulance and we were back at the RUH for 2 weeks trying various different anti epileptic medications whilst becoming increasingly crestfallen about Boris's condition.

After some very frustrating conversations with doctors and nurses we decided things couldn't continue the way they were as Boris was deteriorating and we could see his life slipping away in front of our eyes. We insisted Boris be transferred to Bristol Childrens Hospital where they have multiple Neurologists who are better placed to assist, after a fight or two our wish was granted and he was transferred to BCH.

Soon after we arrived he was put under anaesthetic and given an MRI scan and the experiments started on a whole variety of different drugs that left him permanently on a drip and most of the day unconscious as we monitored his fits as he slept.

I remember the nurses despairing as they ran out of veins to insert canulars fir his changing medication so they started inserting them in his head! Again we were at his bedside 24hrs a day as the nursing team weren't equipped to monitor him 24hrs a day. After a month at the BCH things were looking bleak but luckily we had a friend who knew a specialist MRI scan reader in Italy who we managed to ask a second opinion.'She came back and suggested they test for a condition called Tuberous Sclerosis, this was met with scepticism from the Neurologists at BCH but reluctantly they agreed and sure enough to their surprise Boris had the condition. This led to trialing a further cocktail of drugs all unsuccessful and also several MRI scans of lungs, Kidneys, ECG's, EEG's etc to ascertain whether the tumours were elsewhere as is common in TS. They found Boris had a couple of heart defects common with the condition which added a Cardiologist into the mix of speciallists now monitoring Boris.
    I remember the doctors talked us through one of the most effective drugs to treat epilepsy in TS patients. It was called Vigabatron and had been banned in many countries due to the severe side effects including making patients permanently blind. We had to make a decision to take the risk of making our 2 month old baby blind or to try and stop the continuous fitting that might be causing him irreparable brain damage. With a heavy heart we went ahead and like the other drugs it was ineffective.

It was during one of several long stints in intensive care where Boris was unconscious as they filled him full of medication to try and stop the fits that we decided we needed to get him more help. I'd been reading medical journals during the long days monitoring him at his bedside and the worlds leading brain surgeon for children with TS Howard Weiner was based in New York. In hope rather than expectation I emailed his secretary some details on Boris's case and also his MRI scans, to my amazement she responded a few hours later saying can you talk to Mr Weiner on the phone. It was hard enough getting 5 minutes with a neurologist in Bristol never mind a leading neuro surgeon in New York. I spoke to Mr Weiner for about 10 minutes and the outcome of the conversation was that we needed to get Boris transferred to Great Ormond Street children's hospital in London immediately where a brain surgeon called William Harkness could help him. I then waited in the stairwell of the hospital hoping Boris's consultant would use the stairs when he came into the hospital and I could grab a chat with him. Eventually after 3 hours he arrived and I begged him to organise a transfer to GOSH of which he eventually but reluctantly agreed.

Within 48hrs we were in an ambulance on our way to London. Upon arriving things having moved at a snails pace for the previous 3 months began to rapidly increase in speed. Boris was visited by multiple doctors and put on a 24hr video brain monitoring scan to allow the surgeon to pin point which tumours were triggering the epilepsy. He was also given an advanced MRI under general anaesthetic which the surgeon would use to guide lasers during the surgery. We met Boris's surgeon who was a no nonsense straight talker and he said surgery on a 3 month old was rare but not unheard of and our choices were have the surgery or watch Boris deteroriate and in likelihood die from one of the seizures or become irreparably brain damaged by the epilepsy.

Looking back now it should have been a really difficult decision but at the time it seemed very easy and we both knew this was his only chance of a moderately normal life going forward. We were told due to the proximity of the tumours it was inevitable he'd have a hemi pariahsis (weakness, lack of dexterity in hands feet etc) on his right hand side but that he would hopefully be able to walk eventually and that his eye sight in his right eye would also be effected meaning he would never be able to drive. These were minor hurdles we felt were insignificant due to the outcome should he not have the surgery. We signed the forms and Boris was booked in for 6 hours of major brain surgery the following week.

As parents you'd imagine you'd be emotional wrecks and contemplating the worst etc but I think our friends and family probably felt that way but when you are living it your emotions your body goes into survival mode and you don't allow yourself to be emotional as you'd have a break down. You have to stay strong for one another and for Boris who needs you to make calculated decisions for him.

Numerous times whilst in Bath and Bristol we caught nurses about to administer the wrong medication to Boris due to the constantly changing doses and drugs that were hard to keep track of. The responsibility sadly falls on parents to monitor and get the best treatment possible for their children. Boris had brain surgery on the 29th June 2011 and it was the longest 6 hours of our life waiting, I remember the fear waiting for the surgeon to visit us in the waiting room. He came in with no expression on his face and I remember being in trance as he told us he was happy with the surgery and he felt he got all the tumours he could identify comprehensively without any major complications or bleeds. We are taken up to intensive care to see Boris who was all bandaged up with a massively swollen face and eyes but he was alive and in the best childrens hospital in the world to care for him.

The next week was spent monitoring him and allowing his brain to recover. As he regained consciousness we could tell immediately that the seizures had stopped and he looked brighter and more alert. The prognosis looked positive and the surgeon was very hopeful of massive improvements. We were able to take Boris home to Wiltshire a few weeks later and although he was likely to be on a couple of anti epileptic medications for the remainder of his life we could start looking forward. Boris underwent intensive physiotherapy for the next few years as he worked on his motor skills on his right hand side which were affected during surgery and his recovery has gone brilliantly.

Boris is now 5 years old and in primary school in Sutton Veny, he struggles with mobility, concentration over extended periods and can get tired quickly but he enjoys a normal life and is a very happy and interactive boy. He will need his organs monitoring with annual MRI scans and the effects of the disease will need to be managed throughout his life but the surgery has given him a chance of a full filling life.



He has a younger brother Hector who is 3 and they are extremely close and Hector is already fiercely protective of Boris and know's he finds it difficult to get up and down stairs etc so he helps him get around the soft play centre! The condition doesn't give you much rest and it's in the forefront of your mind every day due to the broad number of problems it causes however as with most things it becomes part of your routine.

Boris is also blessed in having the most incredibly strong, protective and inspiring Mum who has been incredible in fighting for the best care, treatment, and future for her son. It's only in adversity that you truly get to see the depth of someones character and Boris is truly blessed to have Liz fighting his corner for him. We have been supporting the TS Alliance (TSA) charity since 2011 and their is still very little exposure on the condition.

America as in most things have a much more advanced support network over there but the TSA are making massive strides over here to offer families affected by TS the best support and pushing through clinical trials and appealing for NHS funding for advanced treatments of the condition as well as a whole variety of other initiatives.
We are so grateful that proceeds from the throw down will go to a charity in honour of Boris and thank you for every penny raised."

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