Thanks for taking the time to visit my JustGiving page. Please donate if you can, we are racing across the English Channel on Paddle boards...... I know!!!! 

This is the story of Felix the son of very close friends of ours in the words of his mother.

Felix George was born November 24th 2016, a perfect chubby little boy. We felt so blessed and so in love with him after many years of trying and heartache.

From the moment he arrived I found more challenges than my first child with hearing loss, weight loss, umbilical hernia and clear concerns from the medical professionals throughout his first year of delayed development. 

Just before Felix turned two, we were referred to a Community Paediatrician, who happened to specialise in genetics. We were slightly stunned that she wanted to have Felix’s genetics tested, however we remained positive and I thought, well I doubt anything will be untoward’. Eventually we received his diagnosis 3 months later, a chromosome deletion, specifically 11.08mb micro-deletion 11p12-11p11.2, which included Potocki Shaffer syndrome.

Soon we found ourselves in front of a top Bristol geneticist and a medical report from American doctors, with a terrifying diagnosis checklist, of numerous possible conditions seen in children with this super rare Potocki Shaffer syndrome.

Our geneticist recommended referrals to many specialists; cardiology, neurology, orthopaedics, ophthalmology, audiology being just a few, which my brave and happy boy continues to visit regularly, but the biggest challenge we faced was to come on June 25th 2019. 

... so onto the matter in hand .. 

Epilepsy was on our radar due to Felix’s genetics but being an optimist we tried not to think about the ‘what ifs’ and live for the moment. However, nothing could have prepared us for the Summer of 2019 when Epilepsy invaded our little family with such a force, we didn’t know how we’d get through it. 

The anniversary had passed of the near miss of losing our precious boy to SUDEP and naively we thought the medication was doing its job. We’d got through a year of Covid keeping our kids safe and well until October 2020 hit us, with every type of Epilepsy out there, hospital stays and being housebound, since Felix’s seizures were regular, yet unpredictable, two months of living on a knife edge, sleepless nights, constant worry. However December arrived and due to the correct medication, Felix has been stable since .. I feel we’re tempting fate saying it but we learn a little more each day, about our boy's condition and how he ‘ticks’ (epilepsy can be quite personal so treatment varies greatly). We still have sleepless nights and I think we’ve all developed heightened senses, since it’s particularly difficult as Felix cannot communicate pain and feelings etc. We take each day as it comes and hope for the best, fear the worst, but manage the in-between!! 

As with all genetics and medical research, science is evolving but ongoing research needs funding as the brain is clearly complex and how epilepsy is triggered and prevented, differs with each individual and the support that is needed for families is so very important. It’s a traumatic minefield, especially on the sad rare occasions when seizures culminate in SUDEP. If you have a few spare pennies to give to our chosen charity we'd be so grateful and pray that the medical profession can learn more about this life changing condition.

What is childhood epilepsy?

Childhood epilepsy: facts and terminology

Normal brain function is made possible by millions of tiny electrical charges passing across nerve cells in the brain and to all parts of the body. In a seizure, this normal pattern may be interrupted by intermittent bursts of electrical energy that are much more intense than usual. These 'storms' affect the delicate systems responsible for the brain's electrical energy, and may affect a person's consciousness, awareness, movement and bodily posture for a short time. Normal brain function cannot return until the electrical bursts subside. In a nutshell, epilepsy is the tendency to have repeated seizures.

According to Epilepsy Action, epilepsy affects at least 600,000 people in the UK - just over 60,000 of these people are children under the age of 16. Epilepsy is the most common serious neurological condition in the world and can affect anyone at any time in their life - it has no respect for age, sex, race, or social class. Seizures tend to develop in childhood or by late adolescence, but the likelihood of developing epilepsy rises again after the age of sixty-five. There are around forty different seizure types and one in twenty people will have a single seizure at sometime in their life. You can develop epilepsy as a result of the brain being injured in some way, perhaps as a result of severe head injury, difficulties at birth or a serious infection which affects the brain, such as meningitis or encephalitis, a stroke or a tumour. Problems with a child's metabolism or faulty chromosomes can also result in epilepsy.

24th May is the target week for the crossing.

The Challenge is to race across the English Channel on our Stand up Paddle Boards. Due to Covid Restrictions, we will be paddling from Dungeness Power Station to the start of the French Shipping Lane. This means we cover one side of the world's busiest shipping lane and we will be fully supported. We have been training all winter, sometimes even in the snow on rivers and the sea but expect this to be a very tricky experience with weather, swell, tides and wind hopefully working for us. 

The French don't allow you to paddle further anyway. At this point we will be collected by our support crew and return to Rye (hopefully victorious. There are 2 teams of 2 taking part, each racing to get their paddle board over the line first. We will be using Strava to track the race and decide on the winner. 

Please kindly share this and donate. Many thanks Alex