Harlee-Jae's bucket list adventure

http://www.dailymail.co.uk/health/article-2983189/Schoolgirl-4-compiles-heart-breaking-bucket-list-die-moment-rare-condition.html ‌20th of April 2010 a superstar was born weighing in at 6lb 3oz and everyone loved her, her name? Harlee-Jae. Harlee-Jae was the detention of perfection but soon after birth her weight dropped massively and every part of her body went from the lovely colour peach to a horrible shade of yellow. The jaundice wasn't a concern at first it's a typical thing with most newborns but after 4 failed attempts of light therapy to clear it alarm bells started to ring. Aged 2 weeks local doctors started running tests and became very secrative with the family, they wouldn't let us know what they suspected and then BAM our whole world was ripped apart. Harlee had a very rare liver disease which is life threatening and it's that rare that only three hospitals in the whole of the UK are equipped to treat it. Aged 4 weeks she was shipped off to Leeds General and on may 28th 2010 she endured a 12 hour life saving operation called the kasai operation. Hours after the operation her colour returned to normal and everyone thought she was fixed but oh how we were wrong, the condition Harlee has doesn't have a cure, the only cure is liver transplantation once the kasai surgery fails. Harlee battles everyday for her body to deal with the strain from her liver, she has a special diet and takes over 15 medications 3x a day... But she takes every day in her stride. Aged 6 months the family we're dealt another blow when a routine ultrasound showed that she also had kidney disease and early onset nephrocalsisionsis again these conditions are rare and it means that a lifetime of care will be needed, the kidney conditions are treated at the royal Manchester children's hospital. So you'd think after these diagnosis that the child wouldn't have any others lurking right? ... Wrong! Harlee has recently been diagnosed with an extremely rare chromosome disorder called micro deletion 17q12 syndrome, this horrible nasty syndrome is the cause of her diseased organs and it also causes things such as autism, asthma, diabetes, epilepsy and severe mental illness. A huge portion of harlees life is spent within hospitals and it can become very distressing for her, as a way to make her life a little more "normal" and create some fantastic memories for the family Harlee created a bucket list. The bucket list has caused a huge media storm after hitting the headlines and since meeting her idol premiership footballer Danny Ings the family finally feel like all of her bucket list is acheiveable buy we now need help to fund the bigger wishes on the bucket list... 

If you can't donate with money then please consoder donating your organs, sign up and save life's! ❤