[Applause] cameron lives with her sister caroline and her parents casey and shelley in jamestown north carolina for the first few minutes of every day she's like any other six year old lucid and able to play cameron okay you're ready to go but within an hour of waking her epilepsy strikes [Music] surges of electricity in cameron's brain are causing her nervous system to misfire the seizures are tonic her muscles stiffen and contract and she temporarily loses consciousness this is cameron's typical pattern so she'll wake up and be alert and feeling good for 20 to 30 minutes and then she'll have that first seizure of the day with a prolonged seizure her parents have to medicate her to bring her round it'll take a little while just for that medicine to get her body to calm down and then she'll fall asleep and that's kind of how her day starts so she's you know you have that's what i've always said to casey you know we get cameron for 20 to 30 minutes every morning you got to enjoy that time the seizures are caused by rasmussen's encephalitis a debilitating condition that affects less than one in a thousand children at her worst cameron has 15 seizures a day her fits are so unpredictable they rob her of any chance of a normal life uh oh who took off their helmet we've been to the emergency room 10 15 times you lose count if she has a seizure when she's standing up she's in the floor before you can even blink your eye here cameron has to wear a specialized helmet to protect her from the constant threat of a head trauma my neighbor and i went to the beach for spring break and the first morning we were there she had a very aggressive drop seizure and hit her head so hard that it just split right open do a square for me do you remember what a square looks like doctors are unsure what causes rasmussen's but in each case the brain becomes chronically inflamed destroying the brain cells as the disease spreads through cameron's right hemisphere it affects the opposite side of her body gradually paralyzing her left hand side and causing her mental faculties to deteriorate okay now we got some pictures how are a bird and an airplane alike how do they match because because they match but why why do they match why do you say right when she turned five she did testing with our county and she was tested normally and then all of a sudden she was testing at a three-year-old level the way she walked and played ball and then all of the intelligence pieces and speech had just dropped significantly it was like a landslide it just was so significant so fast and let's see if we can line up this one by the summer after she was five she couldn't even hold anything with her left hand the daughter casey and shelley knew and loved was beginning to disappear cameron used to love to sing and it completely stopped singing and um performing she used to love to do that and all of that it stopped untreated cameron's disease will continue to eat away at her brain causing severe handicap and brain damage the only cure is a hemispherectomy a radical operation to remove the right half of her brain for many years this this procedure was in practice because of the risks of the surgery in one day a child or a patient's half of their brain is going to be excised out everything between my fingers why us was the way i felt why is this happening to cameron why is this happening to us what would she be like afterwards would it change her personality would she forget things and lose memories initially i was wanting to do everything whatever it took to not have brain surgery for them to get to go and cut and take any anything out of my child's head let's finish taking our medicine shelly and casey have to weigh up the cost of removing one half of cameron's brain she'll be left with a hemiplegia a stroke-like effect on the left side of her body these are the last two and then you're all done but without the surgery the disease will continue to spread and she will never be seizure-free the operation is the last resort [Music] every year it's just gotten worse and it doesn't matter how much medication you give her what kind of medication combination nothing stops the seizures [Music] i knew eventually she would have to have a hemispherectomy we had been through every option there were no more options and finally you know here's the hemispherectomy staring us in the face and we've gotta move forward with it carolyn packed yours too [Applause] cameron will be treated 400 miles away at a leading pediatric neurosurgery facility the johns hopkins children's center in baltimore as the family prepare for the long journey ahead their friends and neighbors come to say their goodbyes i'll see you after your big trip okay i'm gonna come see you next week how about that [Music] in just 24 hours cameron will be in surgery the hemispherectomy is one of the most radical procedures in neurosurgery dr george jallow is a specialist in pediatric hemispherectomies he performs up to nine each year do you remember me i'm dr jalal i like your helmet where's your right side cameron all right can i just put my let me i'm going to write my initials right there can we lift up your helmet yeah we're done and we'll probably shave halfway your right side but you'll just shave the incision side i mean it's up to whatever you like that would be great i mean i'll show you the incision site says from here to here back there it'll be about as wide as my finger okay it's a very high risk procedure but i mean if you look at cameron she's having so many seizures that she's wearing a helmet or almost body armor just to protect her from hurting herself so you know yes there are risks in that one day of the surgery but they're willing to take it because they they realize that there's no alternative the surgical team prepare the operating theater while shelly and casey have a few precious moments with cameron to prepare her for what's ahead remember when we go to the oxygen chamber and they put the mask on you you're going to put one of those on for a second and go like that oh please help me does that look better i need mono i can't help daddy too during surgery cameron will be monitored by anesthetist marco ramirez you want a hat hi you were sleeping when i met you my name's marco i'm one of the anesthesia doctors can i see the other hand does hear the hand wiggle this hand wiggles a lot that's a wiggly hand you want a hat would you like a house you want a hat all right i'll hit you you want all right sweetheart here's your hat ready put it on you okay ready is that good all right [Music] [Applause] now blow really hard blow harder you can blow harder than that cameron's surgery will take between 7 and 12 hours the next time her parents see her half her brain will have been removed and a new and testing phase of her life will begin six-year-old cameron suffers from a devastating brain disorder that has left her parents with an extraordinary decision i was wanting to do everything whatever it took to not have brain surgery unable to control her fits with medication they have opted for an operation that will remove half her brain we had been through every option there were no more options and finally you know here's the hemispherectomy staring us in the face an hour ago cameron went into surgery it will be seven hours before her parents are reunited with their daughter cameron's neuro consultant dr hartman is in theater as the operation gets underway the surgeon dr jallo peels back cameron's scalp to access the part of her skull that is covering the area of brain he needs to remove they cut into the skull and remove it as a whole piece it's they go just to the side of the midline and then remove a piece of skull that's roughly this area jallow uses a small drill to bore the first hole into the skull bone through it he can see the first signs of brain disease through the juror the delicate membrane covering cameron's brain [Music] he cuts round a section of bone as he removes the front of the skull the damage beneath the juror becomes more apparent the membrane normally translucent is tough and opaque a sign of inflammation we've got the skull off we're just going to open the door which is the covering for the brain then we'll see the whole hemisphere as he folds back the juror he gets his first glimpse of cameron's brain when i look at that brain as soon as i opened up can really see that it was atrophic that it it was there were parts of it that were dying now the main part of the surgery begins it'll be nice if we can take it in reasonable sized pieces but that's what i mean well that yeah let me remember here here take a chunk of frontal this part first this part second that's where we can't just remove it in one piece i mean you know sometimes you think if we had a hot night that we can cut down the middle down the side and just take it out it'd be great but it can't be done that way it has to be done in a systematic fashion a hemispherectomy is a delicate and intricate the surgeon must work piece by piece to navigate through the dense network of veins and arteries inside the brain an accidental cut could cause a lethal hemorrhage jallow must send large chunks of brain tissue to the pathology lab to confirm rasmussen's he starts to cut a section at the front of cameron's brain [Music] after an hour of cutting he disconnects the first large piece of the frontal lobe the size of two golf balls he removes the rest of the right hemisphere working systematically towards the back of the brain the tissue that can't be removed in chunks is drawn out through a suction pipe until the right side of cameron's brain is emptied this is a crucial part of the operation jallow has to leave in a small piece of brain to protect the fragile area surrounding cameron's spinal cord but leaving even a tiny part of the affected brain behind could lead the seizures to return you must sever the corpus callosum the band of nerve fibers located deep in the brain that connects the two halves [Applause] basically the brain tissue is nearly all gone the section is finished and what's left is a cavity and the surgeons are now closing that cavity up her skull will then be put back on it will be held in with some screws and then they'll close the skin and everything will look as pretty as it can the cavity on the right side of cameron's head fills with cerebral fluid at a rate of one teaspoon every five minutes it's eventually reabsorbed back into the body and continually renewed cameron will be closely monitored excess build-up of the fluid a condition called hydrocephalus can put dangerous levels of pressure on the remaining part of her brain to prevent bleeding a white clotting agent is tipped into the space after eight hours cameron surgery is in its final stages dr vining and dr hartman tell the family the good news and she sailed through like a champ so she's stable she is well they are closing up we expect it will be another hour or two and we'll see her in the icu it's a good feeling that i picked up out of the driveway when he was like right and helped him and took him to the hospital for the next 48 hours cameron's head must be kept completely still so the remaining half of her brain isn't dislodged casey and shelley aren't allowed to touch their daughter until she's stabilized as she's transferred to the intensive care unit they're allowed only a fleeting glimpse of her [Music] number okay you got it nice and comfortable okay just give us about a half hour [Music] [Music] cameron's journey to recovery will now begin medical evidence shows that a young child's brain has the remarkable ability to reorganize itself transferring skills normally undertaken by one side of the brain to the other a process called plasticity no one knows exactly how this happens the hope is that as the rasmussen's attacked cameron's right hemisphere its functions shifted to the other side of her brain all the doctors can do now is wait to see whether her remaining left hemisphere will learn to move the left side of her body and adapt fully enough to allow her to lead a full and active life [Music] in barnsley yorkshire fourteen-year-old sean goldthorpe is also facing surgery to remove part of his brain when i go down to great ormond street they're going to be doing two operations and i've got like this dead part of my brain right about here because i've already had a biopsy there because you could see me scar and i've still got four stitches up in the bedroom from there because i have to keep him and i've also asked if i could keep part of my brain but they didn't i had that but sean suffers from epilepsy believed to have been caused by a brain bleed when he was nine in like 2001 i had a brain hemorrhage ear and that like triggered my epilepsy because i had like a bleed around about a year i've had thousands of hits and when i do have them i might have them for one or two days in them couple of days i might have from four to maybe even 20 in a day it used to really upset me just to start we didn't every time we had it and i prepped it i went into panic mode uh the entire my stomach was hurting and you know to see my benefit when you're on your own at home but when he's having a seizure you can see him he goes quiet and all of a sudden he'll just start licking his lips more and more and more and he always he always grabs your arm don't do it and he starts getting tighter and tighter he squeezes me and he the more fit goes on the tighter squeezes he kills my fingers don't they hey epilepsy isn't shawn's first experience of illness at the age of five he was diagnosed with leukemia the cancer is now gone but sean's epilepsy prevents him from leading the life of a normal teenager physical exertion can bring on a seizure so shawn has to be careful about becoming tired he's had to grow up fast living with being ill it's been an emotional rollercoaster all the way through and i think to see a child go through it all is even worse because they should be enjoying themselves should be doing things what everybody else does and he's missed all that shawn has been ill for 10 years but now the neurosurgery team at great ormond street hospital london are offering sean the chance of an operation that could change his life this pioneering unit is the largest pediatric epilepsy department in the country the team headed up by professor helen cross believe they can cure shaun of his seizures by surgically removing the areas of shawn's brain where his seizures are coming from every bit of a brain machine don't mean not because all i think it's like it's like dead brain it's useless an mri scan shows two areas of damaged tissue professor cross has to determine which is causing the problem the areas of abnormality are one at the back here deep in the temporal lobe at the very back and if we take the brain apart here this middle part here is the hippocampus and that's where there is also scarring so we feel there is a possibility that a seizures could either come from this area or from this area and should have seizures come from this area at the back it's very close to the area of brain that actually governs his language and therefore we need to be sure if we're going to remove this area that we're not going to interfere with this language [Music] sean has to undergo a week of invasive monitoring to determine whether surgery goes ahead a grid of electrodes will be placed onto the surface of his brain then his brain will be wired to a machine for seven days while the team analyzed his brain waves it's a tough intensive procedure and even then there's no guarantee that sean will be offered the chance of surgery to cure his seizures we may find that the seizures are arising from an area that is intimately or integrally related to the function of his language and it may be that in that sort of circumstance we're not able to offer sean an operation despite the ordeal a lifetime of illness has made sean determined to go ahead with the monitoring like any teenager sean wants his independence the earlier he has surgery the quicker he can get on with his life as he heads towards adulthood i've had loads and loads of light operations this a bit most dangerous and a bit severe one but i mean it's just like one step forward in it i mean it's like a footballer going to a bigger club and it's just same kind of thing with the operation imminent shawn's mum jane is anxious this is the first chance that they've said surgery is an option it's entirely up to you well in particular sean whether he actually wants to go ahead with it um and i think that's been the hardest part because then you're wondering have we made the right decision three days later shawn and jane arrive at great ormond street sean surgeon william harkness is one of only two pediatric neurosurgeons in the country qualified to perform this operation okay are we ready to go today he will place two sets of electrodes into sean's brain over the two areas they need to examine so this is the first of the electrodes that we're going to put in and as you can see it's a semi-rigid electrode and it's got six contacts each of which are a centimeter apart can have a brain retractor please the electrodes are placed into the hippocampus to reach it harkness pushes the depth electrode five centimeters towards the center of shawn's brain okay there we go use another pair of forces as well the second set of electrodes a thin plastic grid the size of a credit card is placed directly onto the surface of sean's brain slightly obliquely so here you can see we've now slipped the grid into place and the grid you can see consists of these little discs which are the electrodes which will pick up the current now you can see some very fine wires running in the silicon of the of the grid and that these then go and join out to the cables that come out now we just secure these to the dura the covering there because they have a tendency to move with the pulsation of the brain as you can see the brain moves a lot if you're not careful these things can back out that really is all there is to it we now just have to close up the wires leading from the electrodes are pulled through shawn's scalp they will be hooked up to an eeg machine in the telemetry unit where sean will spend the next seven days [Music] two hours later shawn has come round he's in a lot of pain as the effect of the anesthetic wears off hi joe job [Music] snow feeling rubbish [Music] to do it but um still a big decision for him i felt really fed in in there it's better for me just to sit down the venue from looking after him and having to look after me the operation is over but for jane and sean it's only the first step in a long and testing week epilepsy sufferer sean goldthorpe has had an operation to place a grid of electrodes onto the surface of his brain great ormond street hospital is one of only two centres in the country that specializes in invasive monitoring here sean will spend the next seven days wired to an eeg machine while the neurology team analyze his brain waves professor helen cross is in charge of his monitoring what we need to do is in the first instance record seizures because we want to know whether they're arising from the scarred area of the hippocampus that's the depth electrode or whether they're arising from the area at the back of the temporal lobe around where the abnormality is from the previous bleed to induce seizures shawn's medication is withdrawn and he's deprived of sleep after 48 hours shawn has his first seizure his body is still but inside his head electrical surges are causing chaos with his brain waves during the night shawn has five more last night he's had a face from him getting been in bed ten minutes continuous into half past nine and then slept it does use a mice to shout me but i can't just sleep not thinking you know thinking that i might have won and i'm not there for him the next morning professor cross meets with her team to analyze shawn's brainwaves recorded by the eeg machine he tells me he's had his typical seizures overnight yep the first of which is down here oh wow so the first change we see is actually on the depth recording which is not on the grid and you can see that that spreads absolutely to the b strip which is the temporal strip right and then back onto the grid and they've all looked identical totally right the results show that sean's seizures are starting in the hippocampus the area in the center of his head but the lesion at the back is also active to be seizure free shawn will need both areas of his brain taken out the lesion sits in the area of brain that governs language professor cross now needs to determine whether it can be removed without damaging sean's ability to read or speak sean is put through a series of tests to establish exactly which part of his brain is critical to his language function so which paper you're going to read this one pick a passage and read it out loud for me and just ignore what we're doing okay because i'm going to press my button all right the voice it's going to do is interrupt what you're being able to do okay so if you just keep reading and let me know if you feel anything different okay great negotiations which should see the lancashire club one day the premise to the brain working is that it works on the basis of a very low level electrical activity by putting electrical current across two areas we can actually potentially interfere with that function this would give the same consequences if we removed it but of course this is only a temporary thing as sean reads professor cross administers a burst of electricity to one of the electrodes on his brain all right you're doing fine it's my fault as the electricity hits an area that is vital to his language function shawn is temporarily rendered unable to speak i can read it fine oh and i'll read it before you start to use it machine cross tests each electrode to map out the area of sean's brain that is vital to his language function you just want it to be over yeah nearly there and there is no debt to worry about as premiership club clubs you're right what's the matter you feel okay what way back we're in circles okay it's incredible yeah no no you're doing well i'm doing really well okay let's start again the deal to sent angels as a as the cross trusted after 30 minutes shawn is exhausted all right we'll give you a break now we've got probably all that we need but we'll go back and have a look cross and her team leave to analyze the data it's an anxious time for sean and jane as they wait to hear whether they can go ahead with surgery we did reading for this area and all around here the only area that we obtained speech interruption was when we stimulated these electrodes above the area of abnormality when we stimulated those over the abnormality we got no interruption of language professor cross and surgeon mr harkness have made their decision they meet with jane and sean to discuss the results well the whole process has been excellent really we've seen clearly where the epileptic attacks start from the area where the abnormal tissue is i what we can see on the scan is very close to but does not involve speech so when that area was stimulated it didn't affect your ability to read didn't affect your ability to talk just around where the lump is it did affect your ability to read so we know that it would be safe just to take out your abnormal tissue and if you are in agreement we will go ahead and deal with this for you tomorrow i'm a happy man i didn't expect to hear that enough i did it worse so you're quite pleased especially with lower part i thought to be worse yeah it affect things more and afterwards rather it does affect things but sort of always got to be more dangerous [Music] back in baltimore it's five days since six-year-old cameron had an operation to remove half her brain since surgery she's hardly moved her left arm or leg i can just tell just knowing her looking at it when she looks at she knows that there's not something right and she but she can't she's so weak right now she just can't muster the energy to to move it but i know with that determination look that she's got that she'll be able to it's critical that cameron gets moving soon what are you doing there may only be a small window of time in which she can kick-start her brain to regain the use of her left arm and leg [Music] therapists arrive to start working with her she needs to re-learn how to make even the simplest movements mommy and daddy are so proud of you all right we're sitting right here i'm just going to keep my hands over here on your cheek okay you don't want to okay okay even trying to sit is a painful and frightening process and takes all of cameron's efforts look i'm right here hey babe look at here i'm dummy let go of it okay all right that means you got to work really hard ready come here come on let's try to sit up why i want to go home well i know that's why we have to do that so we can go home sweetie to give herself the best chance of walking again cameron must persevere where's your head can you hold your hand up for us but look at that i'm here i'm over here i'm over here the brain is a creature of habit it's okay only with practice will her left hemisphere develop and take over i know we're almost there okay okay we're all done today's steps are small but significant seeing cameron get out of bed was very exciting also because she was very comfortable really until they got her to actually walk but it's really good to see her in a different position up out of the bed and moving her head around like this is wonderful because we just know her body needs to not stand still for too long and just get that movement going so that was really exciting to to see in great ormond street the day of sean's surgery has arrived what are we going down in the next 10 15 minutes or we've put to sleep round about half past eight 25 to nine and uh and see an operation around about a duration around four hours four or five hours and let's see what outcome is [Music] jane and paul leave shawn in the hands of neurosurgeon william harkness this last step has been a huge decision i hope this is the full and final thing that we've got to worry about i think that help it's the end of a long winding road yeah i think that's why he was so excited this morning because they said well this is scared of a new life hopefully we're in business let's have another hitch stitch please everything's pulsating very nicely as well before removing the two areas of damaged brain harkness must take out the electrodes once inside the brain he tackles the damaged area in the temporal lobe at the back clean that up with the koozer and then i think we've done enough here aware how close he is to the vital language function tissue harkness works one millimeter at a time okay i think we're getting into sort of more normal tissue there that's good with the first section removed harkness now has to go deeper into sean's brain to the second area that lies five centimeters inside his head [Music] to get access to it he has to remove a large lump of the front of sean's brain there we go okay irrigating bipedal please the second area the hippocampus lies close to the brain stem the chance of damage is small but the effects could be devastating a cut could cause a massive hemorrhage or leave shawn paralyzed harkness uses a powerful magnifying microscope as he carefully cuts away the damaged tissue there's a lot of tissue out of here that can come certainly very tough after seven hours the operation is over everything went fine i didn't have any nasty surprises which is always nice shawn has had seven percent of his brain removed in a few days time he should be well enough to return home but it will be months before shawn and the team at great ormond street will know whether the surgery has cured his epilepsy obviously we hope that it's a positive outcome we gave him a 70 chance at 7 out of 10 chance that he would become seizure-free and we hope that he's in those seven in baltimore it's been a week since cameron's operation should we go back to the mat and see what other toys we have over there the surgery has left her with a hemiplegia a stroke-like effect on her left-hand side she's now moved to the kennedy krieger institute a specialist rehabilitation center where she'll undergo three weeks of intensive therapy the remaining side of her brain must learn to control both sides of her body can you kick my hand cameron with this foot kick me good job keep going with this fight come on try you can do it real hard always saw your foot move there goes good trying we're going to use this hand take the block i can't good job i see you trying cameron is having trouble using her left hand can you grab the block with this hand but it's important that she continues to try to use her left arm cameron definitely is feeling a little frustrated with not being able to move her left hand or her left leg especially when someone asks her to do something she you know will say i can't or it's not working i'm gonna blow you some bubbles and then i want you to reach up and pop them it's really sweet to me to watch her use her right hand to guide her left hand you know she just kind of takes care of it with her other hand which is just absolutely adorable to me in the coming days there will be no rest for cameron overcoming her disability will demand a tremendous effort big yawning stretch okay cameron's turn and the therapy will push her to her physical limits good job okay no now we have a yawning heart yeah good job cameron six-year-old cameron is recovering from radical surgery and is making great strides it's amazing to me that only nine or ten days ago that she had half of her brain removed and that she is doing the things that she's doing already it's just amazing so today we're going to record how you move okay kennedy krieger's dr amy bastian is using a specialist treadmill to encourage her to try to walk without a limp what we're interested in doing here is being able to train these kids from the get-go right after the surgery these kids initially of course can't move their leg but rapidly they start to be able to stand and bear weight and walk but their walking pattern is asymmetric so we're trying to train out the limp from the start so she never establishes the abnormal pattern cameron has shown extraordinary courage and it's beginning to pay off the progress is it's great yeah i'm excited it's it's really impressive each day brings new evidence that her brain is recovering [Music] can you come get me cameron is really doing very well the physical piece is really a blessing but just to have her talking and chatting and carrying on conversations is what we wanted more than anything what kind of food do you eat when you're camping out do you eat hot dogs or do you eat oh we do eat hot dogs i like hot dogs like ketchup but not monsters i don't like mustard me too she's just hysterical she'll just say the funniest thing so we've just been having a great time with her what are you drinking gravy gravy yes what are you drinking for truly real what are you drinking coca-cola cranberry juice oh green berry juice i forgot i knew you were gonna do that in ten days cameron and shelly will finally return home meanwhile shawn has returned to his home in barnsley it's been nearly three months since his operation and so far he's been seizure free it will be another nine months before he's given the all clear it's strange not having any face and fun for first time in nine years of having 11 weeks of normality my mom and dad have been a lot more relaxed because they entered out to do them to bring me a to any fits whatsoever so they've been able to take it a lot more easy with me it feels better for me and it's better for them so it's better family-wise from being five-year-old to now it's just been one long road going to hospital coming back home we're at a hospital all the time and i hope in the next 12 months he can get on with his life and stay at work i recommend it to anybody i think if this is what somebody can do to change somebody's life um it's such a important time in his life and it can just live rest of his life normal then it's worth two weeks i went through all that back in north carolina seven weeks have passed and it's a big day for cameron what's today school day today is the first day of school what do you think you'll do at school today i'll play uh-huh and eat and eat and what else and dance around do you think you'll meet new friends for her she is adjusted to it just like she never had surgery she hasn't questioned it hadn't questioned her arm being weak hadn't questioned why her leg is not fully strong and that's just a testament to her little little six-year-old strength you don't have to you don't have to worry mommy cameron will never regain full use of her left hand but with time she'd learn to walk with ease and her seizures have gone she has found remarkable reserves of [Music] courage i just can't believe when i do these procedures i always think that you know these children will wake up not talking not moving one side of their body and they're going to be dependent on their parents for the rest of their lives and that's not true i see sandra and toya they're waiting for you are you so excited you if they were sitting down would not be able to tell that they had had their brain removed to have her back and what has always been a real bubbly personality and as friendly as any little child can be is just awesome we're out there it will be a year before casey and shelley can be certain that cameron's seizures have completely gone i am going to show all of the kids but for now the day they were hoping for has arrived only 11 weeks after her operation cameron is starting school and a new chapter in her life her quality of life is 100 times better there is absolutely i would not trade what she was like before until this this is this is how things were meant to be i mean she's just such a happy little girl and things were just wonderful for her [Music] so you