Crowdfunder for 12-year-old who needs operation in USA
Katie Butcher's daughter Kaitlyn is 12-years-old, she has suffered from epilepsy for a long time but it has got got increasingly worse since covid.
She has recently been diagnosed with a rare genetic form of epilepsy which can be operated on but not available in the UK. Katie is set up a crowdfunder to help pay for the operation in the states.
She has recently been diagnosed with a rare genetic form of epilepsy which can be operated on but not available in the UK. Katie is set up a crowdfunder to help pay for the operation in the states.
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00:00Well I'm Katie, I'm Caitlin's mum. I'm the person who started the crowdfunder in the
00:09first place to try and raise some awareness and raise some funds for this one and this
00:15is Caitlin. Caitlin is my daughter, she's 12. Am I going to carry on? She's had epilepsy
00:26since she was 2 and she has NPRL3 focal epilepsy. It's about 100 people in the world have it,
00:42I've just made it 101. Yep, so she's less of a zebra, more of a unicorn. It is quite
00:52rare. Epilepsy obviously affects something like 1 in 7 but as Caitlin said, she's just
01:01made it 101 people in the world who have NPRL3 epilepsy. That basically means that she's
01:08got a genetic form that means that it's medication resistant and causes clustering of seizures
01:21rather than just one off. So she can have up to anywhere between 50 to 124 hours, it's
01:29quite scary. How do you feel about that? Not very good, I hate it. Yeah, so it does make
01:42life a little bit more difficult. We have to fit our life around that really. She has
01:52to be up at a certain time to be able to eat breakfast, she has to have an hour's gap between
02:01breakfast and the medications. I don't really look at times but I think it's usually about
02:067.30 we wake up at. Yeah, trying to fit that in around school, holidays, trips to see my parents,
02:15trips to somewhere where you can just go, yeah let's go to the beach, we can't do that. We have
02:20to say, we'll probably have a two hour window where we have to make sure the meds are done on
02:27time. She doesn't have any reactions to those meds because she's on three different types and
02:31they cause nausea and a lot of other things that can kind of make a difference to her day.
02:38We're looking at like a fourth medication. Yeah, we're currently on three different types which
02:48aren't causing the seizures to stop so we're now looking at a fourth medication to bring into the
02:56table but we've got to take one down before we can then take that back up again. So we've had a
03:01lot more visits into the hospital recently which is not helpful. So it's full on, it's stressful and you
03:12know but she's such a, she's such a warrior. It is stressful but she takes it on the chin and
03:19always, she's always smiling and you try not to let it get to you don't you? Yeah, pretty much. So
03:29there is a new procedure that's become available in America called LIT surgery. But it hasn't become available in the NHS. I can't remember what it stands for but it's basically a laser that lasers the area of where the
03:47epilepsy is being caused. It's not available on the NHS in the UK at the moment. They are looking at
03:55it but we've sort of basically been told that it could be next year, it could be within the next
04:0220 years. We haven't got a time frame nor have we got any idea as to whether she would fit the
04:08criteria, whether it would be only available for adults. So we took the decision to start the
04:14crowdfunder because it's roughly about £108,000 in America and obviously we've got to get to
04:22America. So we set the crowdfunder at £120,000 to try and get there ourselves because you know
04:30this has kind of got a lot worse since Covid. We also lost Brenna's mum just after 2020 so I think
04:40that's kind of you know an emotional response that's kind of made things worse as well. So
04:45ever since then it's got worse. So this is year four, almost five, of you know trying to manage
04:56this. The thought that we could potentially be facing another well indefinite amount of years
05:04before we can get it on the NHS. I just I don't really want to have to put her through that
05:09anymore. So we really need to get this kind of moving. You know we've got an emergency care plan
05:18and an emergency epilepsy box and yeah it's just there. We have to take that everywhere with us.
05:24So this has got her meds in it, it's got her emergency meds in it, it's got a care plan,
05:38seizure diaries, an open access to QA if we need it, you know that kind of thing. We can't go
05:46anywhere without that. You know she's 12. Pen to keep track, to write on. Everything we need.
05:55Everything. Yeah so yeah it's a bit of a, it's gonna be a long haul but if we can get this kind
06:03of crowd funder out there and get a bit of fundraising and hopefully get it moving,
06:08then we might have a light at the end of the tunnel.