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wholesale jerseys wholesale jerseys from china Precious Nyara Bone, 3, is the only person on the planet with her chromosome disorderGet the biggest stories by emailSubscribe We will use your email address only for the purpose of sending you newsletters. Please see ourPrivacy Noticefor details of your data protection rightsThank you for subscribingWe have more newslettersShow meSee our privacy noticeCould not subscribe, try again laterInvalid EmailMeet the superhero toddler who is so unique that she’s the only person on the planet with her chromosome disorder.Little Nyara Bone was diagnosed with chromosome 13q deletions and duplications when she was just 16 months old after months of parents Heather Smith cheap jerseys made in china and Stefan Bone battling for answers.The three year old from Ayr may have 24 health conditions, including being immobile and not being able to talk, but that certainly doesn’t stop her smiling, laughing and living life to her fullest.The tot also has a horse shoe kidney, low muscle tone, global developmental delay, a dislocated and broken hip and feeds through a tube.Heather, 30, said: “After 16 months worth of visits to our doctor she was diagnosed with a chromosome disorder.”This diagnosis is so rare that she cheap nfl clothing uk is the only person in the world with her specific deletions and duplications.”Dad Stefan, 30, said: “Other kids will have their 13q affected but she’s got five duplications and one deletion, so there’s nobody else with that.”With chromosome disorders, you just try and meet it as it comes.”Every case is so individual that you’re never really sure what they might go through at any point in their life.”Proud parents Heather Smith and Stefan Bone with little NyaraHeather set up a personal blog to detail Nyara’s tales, which has proved popular online, with over 1800 folks following her journey.She said: “We’re trying to get people more educated on her condition and not be scared to ask questions.”It doesn’t matter if you think it’s a silly question or we might take offence to it just ask.”Because I’d rather people were more comfortable around her.”Nyara’s journey hasn’t always been a smooth one as the tot was almost killed due to a severe morphine overdose where she was given ten times the dosage she should have.Nyara underwent major life saving surgery for her bowels back in December 2017 where she was cut from side to side.But the toddler became unwell post operation and was taken to Crosshouse.Heather said: “Instead of 0.9mls they gave her 9mls this was checked and signed for by three nurses and one doctor.”I can totally understand that errors happen we’re human, and we make errors. But not to that extent and not for a wee person that size.Warrior princess Nyara lives with chromosome 13q deletions and duplications”It was two hours sitting by her bedside thinking ‘is she going to pull through?'”But despite being in pain, the morphine mishap and living with many conditions, Nyara “just gets on with it”.Part of Heather’s blog, Nyara’s Story, isn’t just to educate others on her daughter’s health conditions but also to tell other parents to stand firm in seeking medical help and advice for their child.. wholesale jerseys from china
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