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Bravery Award

Bravery Award - sponsored by Harbron Home Improvements

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Frazer was born on 22/02/13 after a perfect pregnancy and quick, straight forward natural birth. Frazer developed in line with expectations, meeting all milestones such as crawling, talking and walking.

In 2017, Frazer’s parents realised that his speech was not developing as it should and he was falling frequently and as time went on, they began to notice that Frazer would have vacant spells where he would ‘stare into space'. They became increasingly worried about Frazer's development and falls that were causing a lot of bumps to his head.  Frazer began to have multiple and frequent jerks of his limbs and whole body which would violently throw him forward and to the floor. This then progressed into drop attacks where, without warning, Frazer's legs would buckle from under him and he would fall to the floor. Frazer was admitted to hospital and had many tests in the Neurology Paediatric ward - the EEG results showed that Frazer has epilepsy. 

The type of epilepsy was unknown and an MRI scan and lumbar puncture were carried out on Frazer under general anaesthetic to establish what the cause was. Frazer then developed a persistent tremor. This got worse in the run up to Christmas to the point where he couldn't stand without support - his myoclonic jerks and drop attacks also continued. His speech further deteriorated and he began to regress with his skills. 

After a hospital appointment on 2nd January 2018 he was admitted to Bristol Children's Hospital as an emergency as his mobility and stability were a huge concern. On the day after his 5th birthday, his parents were given the devastating news that Frazer's MRI had shown a significant shrinkage of his whole brain. The blood results showed that Frazer has what they call CLN2 Late Infantile Battens Disease. 

The gene called CLN2 lies on chromosome 11 is responsible for Late Infantile Battens. CLN2 disease is inherited as an autosomal recessive disorder, which means that both chromosomes carry mutations in the CLN2 gene. This is an extremely rare disease where 5-6 children are diagnosed with late-infantile Batten disease each year in the UK. In the short time since Frazer’s diagnosis he has become completely immobile and unable to walk, Wright bear or hold his head up. He has lost the ability to talk and can no longer swallow so is fed through a tube. Frazer is now completely dependent on others for all of his care. He suffers multiple seizures each day as well as dystonic and dystonic jerks. He can have difficulty sleeping and his sight has got so bad that he is now registered blind.  

There is no cure for this evil disease and it will cut his life extremely short as it rapidly takes over his body. Despite all of this, Frazer is still extremely happy and manages smiles and giggles every day. He has never complained about tests or being poked and prodded, not ever. He enjoys making memories with his close family and friends and is the bravest person we know. His older brother Alfie is his super hero and although he is unable to communicate fully, he is still the cute little cheeky chappy he always has been. 

His parents said “He is our super star, a true little soldier. Everybody that meets Frazer falls completely in love with him and even with all he has and is going through, he lights up everyone’s life.”


Isobel is an inspiration, she took up dancing about 2 and a half years ago. Isobel has mild to moderate hearing loss in the high frequencies (which mainly affects speech sounds) and has been wearing hearing aids since 4 years old which makes her story all the more remarkable. 
 She has an excellent work ethic, training hard both at Torbay School of Dance and in her own time at home. She did her first solo at a dance festival about 18 months ago, in her latest festival in July she was in 13 categories doing solos, mime, improvisation and duets and she went on to win the novice ballet 9 years section. 
In addition to this Isobel is very supportive of her dance friends she loves nothing more than going to watch and encourage them at the festivals and at dance school or other shows they may be in.
Isobel performed at the Princess Theatre in Chitty Chitty Bang Bang last year and the Greatest Show, she has just played the white rabbits daughter at Palace Avenue theatre in Doorsteps version of Alice in wonderland .
More recently she has auditioned for 3 Ballet junior associate programmes and has been offered places in all three, Ballet Boost, Elmhurst and the Royal Ballet school it's  a remarkable achievement. She starts her associates journey in September, she's very much looking forward to being part of the Royal Ballet school. She's also auditioning for Birmingham royal ballet swan lake dreams in September. She has just completed 4 dance exams and set her mind to getting the best marks she could and was awarded distinctions in all 4!
She's never let wearing hearing aids hold her back or ever makes excuses, she has a determination and work ethic well beyond her 9 years of age, she accepts things how they are but strives to be better than the person she was yesterday.
 She truly has excelled in her pursuits as well as being a delightful happy go lucky child and full of character and very brave to put herself forward the way she does.

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