Sophie is our youngest daughter who has just turned 4, she was diagnosed with Spinal Muscular Atrophy type 1 (SMA 1) just before her 1st birthday after we noticed that she wasn’t meeting her milestones.

SMA is a genetic disorder that effects the body’s ability to develop and grow muscles in all of the bodies muscle systems, due to this Sophie has muscle weakness in all her limbs and her respiratory system. Sophie also has weakness in her throat muscles and relies on a feeding tube for the majority of her nutrients.

SMA has no cure but there are some new treatments which aim to increase muscle growth within the body and thus lessen the effects that SMA children have.

Sophie cannot walk, stand or crawl, she can’t sit unaided and tires very quickly from the simplest of tasks. This aside, Sophie is a loving, fun and laughter filled little girl who has a smile that could brighten any day.

Sophie loves to be involved in anything and everything, she often gets frustrated about not being able to do things but simply says “I’ll do that when I’m a big girl“, she has courage and determination beyond her years and has no fear.

Sophie loves to be independent and is a proficient driver of her power chair “whizzy bug”. Sophie longs to be able to move freely and without restrictions around our home just like her sister Amelia.

Sophie loves all the things that 4 year olds love, baths, water, sand and anything messy. Sophie loves ice-cream and chocolate.

Sophie has had many admissions to hospital and at times has been very poorly, we regularly have to attend appointments and she has a rigorous and challenging physio regime. Despite all of her challenges Sophie never stops smiling and very rarely sheds a tear.
Sophie constantly amazes us and what she lacks in physical strength she makes up for in inner strength.