When Emily Bean was born in 2011, her parents were prepared (as much as they could be) for the fact that she had a #cleftlip and #cleftpalate. This birth defect was picked up on her 20 week in utero scan. What they weren’t prepared for was the diagnosis that came two years later – that Emily’s developmental delays were as a cause of the excess connective tissue in her brain.
Her ‘condition’ is exceptionally rare, only 6 other cases are documented globally. Over the subsequent five years since #diagnosis (Emily is now 7), with continuous therapy, Emily has surpassed all expectations and now walks, but still doesn’t talk. In January 2015 she had her first epileptic seizure, which was hard to identify, as with all things
Emily, she doesn’t have the ‘standard’ #epilepsy. Her #seizures cause her to loose control of her throat and she stops breathing because she can’t inhale. Since then, we have been on a continuous journey of different medications and doses to try and gain as much control as possible of these seizures – we will probably never be seizure free.
Emily has also undergone many surgeries in her 7 years. Starting with her cleft lip repair when she was four months old and palate corrective surgery when she was one.Subsequently,she has had 16 sets of grommets (a ‘side effect’ of her cleft palate), two MRI’s, tendon surgery on both feet and a few more palate operations. Throughout all of this, she soldiers on and we are eternally grateful that Emily isn’t aware that her life should be so much easier. Emily is a very happy and loving child, who brings so much light and love into the lives of all her know her.
Life with a child with specials needs comes with a different set of challenges and rewards. You learn to discard the notion of ‘milestones’ and instead find joy in the present. You focus on what each new day and it’s therapies can add to her independence and growth (both emotionally and physically). Emily has opened our eyes to the very different path your life can take from the one you envisaged and how while it may be different it is still as it should be.