Emyr's New Wheels

Our son Emyr has drug-resistant epilepsy & Global Development Delay and as a result, finds walking any distance exceptionally challenging. He is a very active boy and loves getting out and about, but sadly he has outgrown his current disability buggy and as with most things specialized, as he gets bigger so does the cost. After lots of encouraging/nagging from friends and family (love you all dearly) we have now set up a 'Go fund Me' page as they felt they wanted to help and support Emyr and us as a family, in an aim to purchase a new running buggy that will cater for Emyr for years to come. We have been exceptionally fortunate that the charity Whizz Kids is looking to contribute towards some of the cost and should we be in a position where more money than necessary has been raised then this will be passed back to the charity. The running buggy quote comes in just over £4000! These buggies have recently been seen at the London Marathon, so maybe one day, we will progress from the fabulous parkrun to even bigger events .........

Here’s to looking to the future and all that it brings. Life’s a journey, enjoy the ride.

Further background info on Emyr should you be interested (make a coffee, it's a long read)..........

Our son Emyr was diagnosed with epilepsy on 3rd March 2017. He has absence seizures and from his first EEG it showed that his seizures were taking place every 10 seconds or so, totalling more than 2000 a day. As a result of the seizures he often suffered Todd’s paralysis of his legs as a result of his brain shutting down to protect itself, this was how we first came to find out that he had epilepsy, up until then they had just said that he had Global learning delay.

Anyway, from March 2017 until August 2018, Emyr had tried five different combinations of anti-convulsants in an aim to improve his seizures. Some of the medication really did not agree with him and left my child in a ‘vegetative’ state. He had no quality of life, sleeping

on average 17 hours a day. We tried to keep life as normal as possible and carried on sending him to school, but this resulted in numerous falls, head injuries, bleeding nose etc. He would sleep anywhere including the concrete of the school playground and without any notice. At home he would just sit on the sofa in a trans like state, drooling, not engaging in anything. As a parent it was horrific, needless to say after four weeks on the new medication we stopped it with immediate effect, enough was enough. The neurologist wanted us to try a different medication, but we were so frightened by the impact the previous medication had that we declined. We as parents wanted to know about other options. It was then that the ketogenic diet was mentioned. We were told though that this diet was not for the faint hearted and the chances of it having an impact with Emyr would be slim purely due to its level of difficulty and the fact that Emyr has learning difficulties and that he won’t understand and that we would have to watch his every move (we do anyway!!). Nevertheless, our neurologist referred us to a pro-keto neurologist and August 2018 we started Emyr on the diet. Within 3 days his myoclonic jerks stopped (type of seizure), he was more alert, eyes less sunken in and his sleep less disrupted. Nothing else had changed only what we were feeding him.

Emyr has now been on the diet over four years (longer than ever anticipated - most come off after two years) and we have seen huge improvements:

• Better sleep, we are actually having nights where he sleeps through, previously he would wake 5/6 times a night due to the seizures

• He takes less naps now throughout the day, occasionally just one short 30-minute nap compared to pre-diet, he would’ve slept daily and anywhere up to 3 hours at a time.

• Much steadier on his feet, his gait is more aligned, and this means he has less falls and can move around easier than before.

• The haze has lifted, he is more alert. His eyes are less sunken in and he takes in his environment and surroundings, often pointing out things, like star, dog, moon, simple things but progress for him

• He has found his personality and what a fantastic personality it is (biased, I know) although non-verbal he has started communicating through mannerisms, such as when asked to wait, he looked at his wrist to imitate looking at a watch, whilst huffing!!

• He is constantly trying to say more words and, in some cases, putting two/three words together.

• He has a better understanding of things that are being said to him, you can give him an instruction, such as put it in the bin, or look for your shoes and he understands

• Improvement in both his fine and gross motor skills and also concentration

The impact this diet has had on our son is nothing short of a miracle. His seizures have been reduced to approx 200 per day.

I only wish that we had been made aware of this before having gone through the heartache of some of the medications and their horrific side effects.

Emyr really enjoys his food thankfully! Yes, the diet is challenging and you have to forward plan everything, there is no quickly pop in the shop and grab something and there are times we feel overwhelmed and almost like life as we knew it will never be the same again and in some ways this is true, but the benefits far outweigh the negatives.

Here’s to looking to the future and all that it brings. Life’s a journey, enjoy the ride.