Jane King is desperate to give her song-bird daughter Georgia the chance of pioneering brain surgery which could help her escape a life blighted by Tourette’s Syndrome.
For 10 years, 19-year-old Georgia has faced a daily battle with a brain condition which has robbed her of the teenage life she should be enjoying: talking, walking and even getting dressed are tasks that can be plagued by all-consuming ‘tic attacks’ that can leave her convulsing on the floor and needing an ambulance.
It’s only when she sings that her tics disappear, but while it brings her great joy, music is not the medicine that Georgia needs.
Surgery could offer Georgia a lifeline: but it’s not available on the NHS and costs £70,000 – a sum her mother has promised her they’ll raise, as quickly as possible.
Both mother and daughter hope that by talking about the daily challenges that living with Tourette’s involves, they will raise awareness of a misunderstood condition and help raise money for Georgia’s operation.
For many people, Tourette’s (or rather the uncontrolled swearing or inappropriate words and phrases we associate with it) is something that makes us giggle, without giving the condition and the people affected about it any thought.
But Tourette’s is far from a laughing matter.
The hallmarks of the condition are the tics, sudden involuntary body movements and sounds – and the severity of the tics can vary greatly, from person to person and day to day.
They can include blinking, head jerking, facial movements, throat clearing, body jerking, hair-pulling, sniffing, twirling, touching objects and other people and tongue-clicking.
Some tics are barely noticeable, others are painful and debilitating and can make everyday life an incredibly difficult, exhausting battle.
Many of those with Tourette’s will also have other conditions such as Attention Deficit Hyperactivity Disorder, Sensory Processing Disorder, anxiety, learning difficulties or Obsessive Compulsive Disorder which further affect their wellbeing and their lives.
It’s easy to see why people living with the syndrome are so tired of hackneyed cliches that see Tourette’s used as a punchline, a slur or an excuse for poor behaviour from neurotypicals.
As Georgia says: “I wish that people knew that Tourette’s isn’t just about swearing or saying funny things when you shouldn’t and I wish they knew it’s not an easy thing to live with.
“My words can be trapped inside me and I can’t get them out and it’s horrible. I just want a chance to have a more normal life.”
Georgia showed signs of being neurodivergent when she joined primary school and teachers asked Jane to seek medical help for what they thought was a form of Autistic Spectrum Disorder.
“I had Georgia when I was 23 and she was my perfect little girl, my princess,” said Jane, a laser therapist and skin technician at Coltishall Clinic, who lives in Norwich.
“It was only when she went to school that it became clear she was quite different to the other children – the way the teachers described it to me was that it was if she was ‘lost at sea’. They suggested I went to the doctor to ask for tests.”
Investigations were undertaken to check for petit mal ‘absence seizures’, there were ECG tests, hearing tests…every result came back clear.
“I went back to the school happy and expecting them to be too. But they said to me ‘you must go back. Something is wrong’. You look back now, and you can spot little signs: she hated too much noise – she’d be the child with her fingers in her ears at parties.
“It was just before autism was spoken about as much as it is now. We had tests, but then when nothing came of it, we just carried on as normal.
“ASD is often harder to spot in girls as they tend to mask it, but when she was about nine or 10 and I was pregnant with Hector, I noticed she was making strange sounds.
“She started ticking and for want of a better description, it sounded like a little dog. The neighbour actually thought we had a new puppy. I tried to joke with her and say that she needed to stop because otherwise the baby would copy her – but she couldn’t.”
When Georgia transferred to high school, the tics she had developed were difficult to mask.
“What’s quirky behaviour at middle school is far more difficult to hide at high school and that’s when the real problems started,” said Jane.
“Girls mature before boys and the girls at her school were getting into make-up and boys and going out and Georgia was still like a little girl, but trying to fit in.
“The only saving grace was that while it broke my heart to watch her, her condition means that she really wasn’t bothered – I was feeling pain for her that she wasn’t feeling herself. She was oblivious.”
Jane reached out to CAMHS [Child and Adolescent Mental Health Services] and Georgia was eventually diagnosed with Asperger’s Syndrome and Tourette Syndrome. She also lives with Tourettic OCD.
“I am not a doctor, but I believe that she should have been diagnosed at the age of five and perhaps they we could have accessed more help,” said Jane.
“We call her OCD ‘Horrid Henry’ and say that he tells her to do all these things and she can’t stop herself. It affects her life every single second of the day – even when she’s asleep she can tic.”
Treated by the Child and Adolescent OCD service at the Maudsley Hospital in London, Georgia still has to cope with tic attacks which can last for up to five hours at a time and which can appear without warning.
“These attacks are exhausting for Georgia,” said Jane, “she has convulsions and she can hit herself or pull out her hair – she’ll say ‘sorry, Mummy’ but she can’t stop and it’s heart-breaking. It means she’s really vulnerable.
“When they’re over, she can feel so low that she just doesn’t want to be here anymore. To hear your child say that is the worst feeling in the world.”
Georgia herself researched the treatment she hopes will offer her some respite from the hurdles she has to overcome every day, from unwanted attention in public to injuries, depression to hopelessness, a reliance on medication to a life half-lived.
Deep Brain Stimulation involves implanting electrodes within certain areas of the brain which produce electrical impulses that regulate abnormal impulses.
It can be used to treat a number of conditions including Parkinson’s Disease, tremors, Dystonia, Epilepsy, Obsessive Compulsive Disorder and Tourette Syndrome.
A low-risk surgery, Georgia isn’t worried about the procedure, just desperate to be able to try and find a solution to the condition which rules her life.
“I’m not scared, not at all,” she says, “I just want to have the surgery because even if it only improves life for me a little bit, that’s still a lot and would mean I could have a more normal life. I’d just like to be given a chance.”
Jane’s grandmother paid for Georgia to have a private consultation ahead of treatment where she was told that her symptoms currently meant the severity of her Tourette’s is “4/5” and that the DBS could reduce this to 2/5.
“It would be absolutely life-changing,” said Jane.
Now living in residential care, she sees Jane and her younger brother Hector regularly – she has more freedom, but also the structure of care workers who can help with medication and support and ensure she is safe.
People have rallied to raise money for her surgery fund, with club nights, sponsored runs and nights where Georgia showcases her wonderful singing.
“Everyone has been so kind and we are so grateful. I have promised her that I won’t stop until the money is raised, and then I have promised myself that I will keep on campaigning for all the other Georgias out there that need help,” said Jane.
“I’m her mum. I love her and I am so proud of her. She deserves a chance.”
Georgia loves to sing: her tics disappear when she’s singing (although singing couldn’t stop an attack) and she’d love to explore opportunities to record and sing in public more.
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The teenager has written her own tongue-in-cheek song which showcases not only her beautiful voice, but also some of the tics that live alongside her every day.
She sings: “Just like a puppet pulled in every direction, with no control, I’m tired of my strings being pulled. Sounds coming out of me, embarrassed I sound like a fool, I try to resist them but I always lose…”
It should go without saying, but Georgia has no cause for embarrassment whatsoever – she has the voice of an angel.
· Donations to help Georgia be made here
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