Emily was born at 28 weeks and spent 3 months in hinchingbrook special care unit. We were unaware at this stage that anything was seriously medically wrong.

About 3 weeks in we were advised that Emily was indeed unwell and was advised that she was born with chronic lung disease and that they would have to give her very strong steroids to improve her breathing to enable her to breath without a ventilator otherwise Emily would never come home or even survive. We received the devastating news that she had the severe of 3 types spastic quadriplegia, we were absolutley heartbroken, words cannot explain the pain you feel when receiving news like that.

SQ is generally caused by brain damage either before birth, during or shortly after. The symptoms of SQ include, muscles that rapidly contract & release, joints that cannot stretch or move, muscle tightness, muscle tremors and limb scissoring, speech/ language disorder, inability to walk. Another common issue is foot deformities, Emily sadly suffers with all of the above, in addition often has difficulty swallowing aswell.

Emily has had numerous surgeries to relocate both hips and also surgery to help with the deformity of her feet. Emily‘s MRI head scan showed apperances consistant with bilateral periventricular leukomalacia which means damage to the nerve cells, which is a form of brain damage. Unfortunately there are no treatments for PVL.

Emily is on a large range of medication and also wears foot splints daily, Emily requires 24 hour care and requires adult support for all activites of daily living.

There are treatments for Emily but the true sad reality is that she will never walk, talk or be able to live independently which for any parent is a major constant worry.

WE THANK YOU FROM THE BOTTOM OF OUR HEARTS

Thank you for taking the time to read her story and if you are able to donate to emily we are truly very grateful. All we want is for our daughter to be happy and enjoy her life like every parents dream