Hello, Im Janine and proud to state that I am not normally the type to ask/beg for help and certainly not money but I need help over a stressful time without having to overly worry about pennies.

The pic is of our sanity saving dog, Jazzy. Ive kept my sons details private

The idea to do this came from my 14yr old daughter who should not even be fully aware of everything.

The stressful time is that my son E will be having MAJOR invasive brain epilepsy surgery to determine if he could potentially be cured completely.

This assessment surgery involves a robot drilling through his skull and connecting 10-14 electrodes directly to his brain. It's called an SEEG, or Stereo EEG if you fancy a Google!! We are hoping and praying that this will tell the surgeon exactly where his seizures begin and give them a surgical target for THE BIG MAIN SURGERY at a later date.

I have to spend 3 weeks, 3 hrs away from my family and the accommodation costs, car hire costs (I can't be without a car due to disability) and my husband will need our car for the other children.

The cost for just my accommodation and car is almost £2000 alone! No I'm not staying at the Savoy or hiring a super car, these costs are for basic B&B and a small car.

If youd be interested in raising roughly a quarter of those costs with me then I would be eternally grateful. Im not even thinking about food costs, fuel costs etc. Every penny will count!!

My son is having MAJOR brain surgery and I'm absolutely scared out of my wits end.

If you grab a cuppa, I'll try and tell his story.... Im really not the best at story telling but I'll try...

I would never wish the last 5 yrs of our life on anyone, this has crept into every crevice of our life's.

My now 23yr old son had the horrendous diagnosis of refractory left sided epilepsy (medication resistant) when he was just 17!! He'd just applied for his provisional driving license and was looking forward to going to university to study his passion, professional policing! Hes only ever wanted to be a police officer and in particular a beat Bobby!

He was officially diagnosed in June 2019 but this followed a suicide attempt because he'd been having only nocturnal tonic clonic seizures and we didn't know! When we found him having his first 'known' seizure I assumed that he'd overdosed on something. His MH had suffered because he didn't know why he felt so crappy all of the time!! He had been experiencing 'absent' seizures but MH and Crisis team had put those down to his brain 'shutting down' to protect his MH

Cue, test after test, scan after scan and appointment after appointment over the last 5 yrs! Sadly, we are so used to his seizures now that we just deal with them, but everytime he seizes everytime he sleeps, he's at risk of SUDEP! His heart rate hits mid 170s and his blood oxygen levels drop to low 70s!!!

The injuries that he has sustained over the years have been horrific in themselves and because he can't go in a normal car after a seizure we have to rely on pur good old NHS ambulance service. The first couple of years he was constantly in and out of A&E. We have sort of gotten used to which seizures need emergency help and which seizures we can just sit with him until he comes around (obviously after protecting his airway and protecting his head)

As a large family it has affected everyone in different ways. One brother panics, another is so used to it he just almost ignores it, one sister locks herself in the bathroom and the other starts bringing cushions!!

I, deal with it, make sure he's safe and then I cry!!! It's awful so see your baby suffering.

Over the last 5 yrs we've been under 4 different NHS trusts, too numerous to mention appointments, tests, scans, medications. Even though he is diagnosed as refractory he still needs 5 different, strong medications (he takes 18 tablets per day) The medication does seem to slow the seizures but just as we get into a form of 'pattern' epilepsy laughs at us and changes it all up. He now experiences, focal, absent, tonic clonic and myclonic seizures daily, not every one but at least 2 of each daily!

We are finally, now at a point of potentially having a full cure surgery, which will literally give him his life back and having to worry about costings etc is just too much for my MH too

I can honestly say with my hand on my heart that I would NEVER want anyone to be in our position and ideally I'd like everyone to be oblivious but I needed to tell his story because I need a little help and being honest raising awareness of how totally life changing epilepsy can be can only help the next family who are thrown on this not so fun fairground ride!

I am MORE than happy to answer ANY questions asked.

Now, my brain hurts! I hope that I've given an understandable explanation of our lives, Particularly E's

Right now, even just good blessings will help us!

THANK YOU FOR READING

Much love!