Does this sound like your typical morning: wake up and get out of bed, stumble to the bathroom, grumble about aches and pains, walk to the kitchen and plan the day ahead as you sip a cup of tea?
If it does be thankful – my niece can do none of these things.
Meet 5 year-old Amie, her older sister Micalea, Mum Andrea and Dad Chris. Aren’t they beautiful?
Amie was born with a rare genetic disorder – a mutation of the KCNQ2 gene in the brain – which causes epileptic fits and severe intellectual disability amongst other challenges. She is confined to a wheel-chair as she cannot walk, nor stand, nor sit unaided, nor hold her head up. Nor can she speak. She is fed – four times a day – through a tube in her stomach. But can you see her beauty and can you see that beauty reflected in the faces of her family?
Amie is often in hospital with respiratory problems – she cannot cough properly to clear her throat – but she is also often at school in a wonderful sensory program called Smiles.
Amie is vision impaired but her hearing is sharp and like any child she desires to be around the noise of her family. She adores her sister and loves nothing more than lying on the floor, unrestricted by a chair, with Micalea.
So in the morning Amie may not be able to get out of bed, stumble to the bathroom, grumble about her aches and pains, walk to the kitchen, plan her life or drink a cup of tea, but she can smile.
And Amie’s smile is a candle for the darkest of nights.
Amie’s family are currently fund-raising to purchase a wheel-chair friendly van to replace their typical family sedan, allowing Amie some of the freedom we take for granted. If you feel you could spare a dollar please visit their webpage at www.givealittle.co.nz/cause/amie
With love and thanks