Weʼre raising £1,175 to help fund Beau's future of uncertainty
- Portsmouth, United Kingdom
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In 2009, after a non-eventful, “normal” pregnancy a beautiful baby girl was born, weighing 8lb 12oz. A much loved younger child of your average hard-working family, Beau was a happy, giggly little bundle of joy who completed the family and made them complete.
When Beau turned 12 months it was apparent that she wasn’t reaching her milestones, her GP didn’t seem concerned that she wasn’t walking or crawling, yet he referred her to the Paediatric team at Queen Alexandra Hospital as a “precaution.” This precaution led to Beau being diagnosed with severe “Global Developmental Delay” for which she was put forward for multiple therapies with the hope that they would aid her development.
At the age of 2, when most children are dreaming of Thomas The Tank Engine or Peppa Pig; Beau was having seizures in her sleep and vacant seizures during the day.
Nursery time, for most children, is a time of rhymes, finger painting and playing with friends, but for Beau it was filled with therapies in the hope they would help, at a centre that catered predominately for children with special needs.
When Beau started school, unlike most parents whose hope is that their children learn to read and write, Beau’s parents’ main aim was that she could learn to hold a cup and drink it herself.
So what exactly is wrong with Beau? Well if we said “KCNQ2 Syndrome” I am sure you would completely understand, right????
Yeah, me too…….
So ‘KCNQ2 Syndrome’ is genetic Epilepsy caused by abnormal flow within the body’s Potassium Channels.
Any wiser?? Yeah, neither are we and it has been 18 months since this diagnosis. Due to Cognitive Learning Difficulties Beau is unable to feed herself, wash & change herself, walk up or down stairs - the list is endless.
KCNQ2 Syndrome affects approximately hundreds of children worldwide, Beau’s precise mutation affects just 3.
So, why are we called Beau’s Battle? Because the very definition of the word battle means “someone’s effort to achieve something in spite of very difficult circumstances.” Beau’s family have not only fought to get her diagnosed, but also to get the support and recognition of the disability..
To help with Beau’s care Portsmouth City Council issued Beau a Disability Grant to have a Wet Room/ Changing Room built at the rear of her house. After 2 YEARS of mediation, planning objections, hearings, fall-outs etc (definition of the word battle). Beaus Wet Room is now complete. However the grant didn't cover the entire cost of the build and as such has left the family with a debt of over £8000.
So what does the future hold for Beau? Well, she will never sit exams at school, attend prom or university. She won’t marry or have children of her own either. What she will do is continue to be as she is; she will need 24hr care, constant monitoring and support. She will never be independent, carefree or have dreams of her own. But with your support and with your understanding, Beau can have a future that isn’t a struggle.
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Apr 13, 2018
Because I can’t make it Sunday xxx
Jan 26, 2018
Nov 27, 2017
Love from Aunt May and Uncle Robert xx
Nov 18, 2017
Nov 18, 2017
Amazing Family - hope u get some answers soon x
Nov 9, 2017
You all do so well to stay positive! Love the updates on Facebook too! x
Nov 3, 2017
Hoping you find the answers you need. Amazing family xx
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