A poster at Overclockers called Skywalker has recently been told he has to wait months for his daughter, Bethany, to have an MRI scan, something which isn’t good at all.

Bethany has tuberous-sclerosis which means that she will suffer from the following for the rest of her life:

• Epilepsy
• Skin problems
• Learning difficulties
• Development problems
• Speech problems

With the possibility of

• Kidney problems
• Eye problems
• Lung problems

Bethany was only 18 months old at the time she was diagnosed, at a time when it was assumed she merely had Epilepsy, as you can see, it’s a lot worse than that. As time has gone by things haven’t gotten any easier, Bethany is now fitting up to seven times a day, including in her sleep, and if this wasn’t bad enough, Skywalker and his wife have another child, Brandon, who has ADHD and OCD.

Below are the updates ranging from 17th April 2007 to the latest, 29th May 2008.

With this, donations can be offered to help Bethany, for the details please, click here.

April 2007

Went to the childrens hospital for the results a few days ago expecting to be told my young 18 month old daughter has epilepsy but oh no its worse

The epilepsy is cause by something called tuberous-sclerosis which explained to us saying that the epilepsy is just a side effect of this

She will suffer from the following for the rest of her life
Epilepsy
Skin problems
Learning differcuiltys
Development problems
Speach problems

With the possibility of
Kidney problems
Eye problems
Lung problems

Plus a few other things.
She is now booked in for tests for the last 3.

It’s totally screwed my head up to be honest and I feel like kicking the crap out of the wall for thinking something like this could happen to a girl as beautiful as my little princess.

The thing is looking at her you couldn’t tell anything was wrong.

October 2007

Well another test over and done with , it was the eye test this week to see if she has any tumours on the back of her eyes which could turn her blind and I am happy to say there fine

So far she has had the following

Heart – Clear – Tumours could cause an irratic heart beat causeing problems

Kidneys – Clear – Tumours could cause a polycystic kidney

Eyes – Clear – Tumours on the back of the eyes could cause her to go blind

Downsides

Brain – Tumours here have caused tuberous sclerosis complex which inturn she is suffering from.

Epilepsy – Having up to 7 fits a day now and also fits in her sleep.

Slow learning and development – Beth is 2 in 3 weeks time and still does not talk, walk or do anything children this age normally do. She is currently under God knows how many specialists and and having lots of therapy.

Skin – She has a skin test next week – We know she will fail this as there are already signs of what is called the buttery fly or ash tree which is where her skin comes up in permanent marks on her face that look like leaf marks in the shape of a butterfly on the front of her face, The only way to remove this is through laser surgery.

Shes still coping well and as happy as ever.

December 2007

Following on from THIS thread

Today saw a check up on Beth and her medication and all is not good . Basically the high dose of drugs she is on is not working at all

To cut a long post short the main man there saw her have a fit where it grounded her to the floor and luckily I caught her in my arms and with this in mind now they have seen how bad they are there talking about brain surgery as her epilepsy is so complex and un-controlable . An operation for her condition on the brain has not been performed in the united kingdom yet and is looking like the only outcome to control her fits .

There could be bad side affects and high risk involved depending on where the tumour is on her brain that is causing the fits. The worrying thing is that this is just for one of them as we found out today there are several

Absolutely gutted again like I was in the 1st post as something like this is such a hard choice to make and im feeling angry all over again as there is not really anything I can do once again

February 2008

Its been a while since I have put an update due to it not being as positive as the last lot.

Since the turn of the year her medication has been changed to try and find one that will help her and as of yet nothing is working to stop her having fits. She has been having blood tests to see if the medication is getting into her system which it is.

They have said her fits are uncontrollable and her epilepsy is one of the most complicated they have ever seen and since been passed to another hospital in London, she has to attend an appointment 70 miles away on the 30th of march without a release date to basically be monitored 24-hours a day by video and also from what I can remember she will be plugged into a ECG machine. It looks like it will be the best part of a week for her stuck in a hospital bed.

There is then an appointment on the 9th of April to go over the results and as it stands it’s looking like this will be the one to book her in for major brain surgery to remove approx 50% of her brain depending on where the tumours are. If there on part of the brain they cannot remove then its a basic your stuck with it .

Shes getting on well with her walking now but still having problems on her left side of her body, shes now also saying approx 5 words with what she know the meaning, – Mum, Dad, Brandon, Juice and of course the main one with is ‘NO!’ .

A little picture of my angel as she had her first Christmas at home at the age of 2 without being in hospital.

The little boy also said he wants to have his picture put up as you lot dont know who Brandon is . Brandon is the other child who believe it or not uses all our energy rather than beth, Beth is placid and Brandon is hyper as he has ADHD and OCD (a bad mixture I can tell you) which are 2 other effects from what Beth has but we are all waiting to be tested to see where Beth got her condition from. He’s 4 years old with the mental age of a 9 year old and the vocab of a 10 year old and boy, he doesn’t shut up all-day long . A lot of people just call him ‘Energy Boy’, as much as a pain in the ass as he is he actually help us get through a lot of it as he is so loving at times (violent at other times) and the comments he makes you would think he knows more about Beth’s things than we do at times.

Anyway enough of me going on as I actually have lumps in my throat and tears in my eyes as it is all becoming a lot to deal with.

May 2008

We had London AGAIN today for Bethanys results.

We were say in a room with the best and I cannot stress this enough, THE best neurologist in the country and his team for over an hour today. It went along these lines:

He had studied the last MRI scan and the one from last month and his findings where that there is a large tumour at the back which is also surrounded by a bunch of smaller ones and one of these at the back of the brain is causing the epileptic fits. I asked him how many there where in total all over and his finger repeatedly pointed at the screen saying here, here, here, here, here, here, and so on… But this is the one we need to talk about… It’s roughly the size of a 50 pence piece.

Basically what needs to happen is they need to do an up to date MRI which will be in the next 2-3 months – Go NHS…

They will then need to do something they call mapping as the large tumour is also surrounded by some smaller ones and this will make sure which one it is , The mapping will mean her skull will cut open and sensors will be placed all over the place and they will also be able to trigger if needed a fit to help see which it is. Then she will be put back together and wait for the results
After that it’s brain surgery to remove part of the brain.

This is where it gets bad – The fits are affecting her left arm mainly and also her left side of her face and left leg due to the tumour crossing the nerves of that area or the nerve going around it. If its going around it it’s much better as I will explain below:

deficits from main operation (only the arm as this is the one he thinks it is)

This is the best outcome:
If the nerve that controls the left arm runs around the tumour , once its removed she will be weak in the areas its affected for the rest of her life as in very slow to use them, strength wise and co-ordination wise.

This is the worst:
If the nerve runs through the tumour then its a very high possibility that once removed she will be completely paralyzed from her left shoulder down for the rest of her life.

That is as much as I want to say at the moment as I’m feeling very sad at the moment after writing this.

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