Hey there! My name is Tilly Griffiths and this is my story so far…
On January 27, 2000, I arrived happily and healthily into the world, finally completing our family of four in Stoke-on-Trent, UK. My sister, Candice, then aged just two years old, was bursting with excitement to welcome “Tiddle” into her home and, to this day, we remain the best of friends.
The first few months after I was born were much like those of any other newborn, encountering lots of ‘firsts’ as I came to terms with the world around me. I was a perfectly happy baby throughout this time and it wasn’t until I reached the age of around 8 months old that my parents first began to notice that, physically, I was falling behind. Having closely watched the development of Candice just two years earlier, it was apparent to them that something just wasn’t quite right as she watched me make no attempts to reach expected physical milestones such as sitting and pulling myself up to a standing position. I lay mostly on my back without rolling over and took great enjoyment in playing only with small, lightweight objects.
For a long time, my mum and dad were dismissed by medical professionals as neurotic parents and told simply to give me time — after all, all babies are different and “she’ll catch up when she’s ready.” Eventually, one doctor took a leap of faith and, after agreeing with my mum that something wasn’t quite right, I was sent for testing. On February 14, 2001, aged 13 months, I was diagnosed with Spinal Muscular Atrophy – Type II.
SMA is a recessive genetic neuromuscular condition which causes profound muscle weakness and leaves me with the approximate physical strength of a newborn baby. This means that I have never been able to walk, stand or crawl and require physical support with all aspects of daily life. Since the respiratory muscles are also affected, SMA in its most severe form (Type I) is the no. 1 genetic killer of infants and, as a Type II, I was given just six years to live.
As would be expected, my parents were devastated and struggled hopelessly to acquaint themselves with this entirely new and unexpected future that had been laid before them. Gone were their dreams of pretty princess dresses and exciting childhood adventures and in their place was life-saving medical equipment, countless hospital visits and the ominous number ‘six’ lingering in the not so distant future.
Yet, between emergency hospital admissions for respiratory failures and with the support of many wonderful organisations and fairly recent advances in technology, day-to-day life began to resemble some sense of normality and a future slowly emerged that had, until then, been out of reach. The pneumonias grew fewer and further between, and I flourished as a young girl, pretty princess dresses and all, excited to explore all that life had to offer. The arrival of my first powered wheelchair at the age of two ignited my spirit and granted me, for the very first time, the independence to truly discover myself and this magical gift set in motion a sequence of extraordinary events that would go on to define me as the woman I am today.
Determined even then to achieve the unexpected, I followed my able-bodied sister’s footsteps by enrolling in mainstream education and going on to achieve highly in my academic endeavours. Outside of the classroom, I began ballet classes using a specialist ‘dancing frame’ put together by my dad and physiotherapist, and learnt to sail solo (in a bright pink boat!) using specialist fingertip controls. I climbed mountains; I had seaside adventures; I sit-skied in Austria; I ice-skated with olympic champions; I went on safari in Kenya; and, the most magical of all, I experienced the magic of Disney World in Florida. Despite our challenges, I was blessed with an action-packed, thrilling childhood and I will be forever grateful for the tremendous support we received as a family to make this possible.
Over the years, I have had the great privilege of being able to give something back to the charities and organisations that have quite literally transformed my life. Through both local fundraising and delivering speeches at high-profile events such as Caudwell Children’s annual Butterfly Ball, I have raised in excess of £5 million so that other children with disabilities can experience the joy and freedom of a powered wheelchair. I have also been heavily involved in the Donna Louise Hospice for Children and Young People and Rudyard Sailability, and at the age of eight I was named a Child of Courage at the glittering Pride of Britain awards for my dedication to charitable causes. It was also around this time also that my book, Tilly Smiles, was published which, written in verse, attempts to shine a positive light on the world of disability. This book was distributed among primary schools across the country and given to families with a recent diagnosis of SMA.
Although maintaining my respiratory health remains a constant battle even today, my days of sinister hospital admissions and major surgeries are (touch-wood) far behind me and I have been able to dedicate the past six years to achieving my most ambitious dream yet: attending university in the USA. After success in both my GCSEs and A Levels and a gruelling process of applications essays and standardised tests through which I was supported every step of the way by the Sutton Trust US Programme, I am now a freshman at Stanford University in California with the intention of studying Communications and International Relations.
These past few months have been a real whirlwind with everything from leaving home to setting up a whole new team of personal assistants to support me through day-to-day life on the other side of the world. Between navigating compelling classes and diving head-first into the vibrant social scene that Stanford has to offer, I’m still in complete awe of just how far this crazy journey has brought me so far.
I invite you to join me as I navigate this exciting new chapter and I will endeavour to keep you up-to-date on all that’s happening here in sunny California as I experience the challenges and thrills of life as a young woman with a severe physical disability. In the meantime, keep dreaming big, shining bright and being extraordinary.
– Tilly xoxo