For Isabella Alford, every day is an adventure.
Whether it's seeing friends at school, going swimming, or taking trips, the five-year-old from Thetford is always doing something fun. Her parents, James, 45, and Deborah, 39, are constantly having to dream up new activities.
That's because Isabella's time is precious.
In March 2011, at the age of two, she was diagnosed with Tay Sachs Disease, a genetic disorder which affects one in 360,000 births a year in the UK.
Life expectancy for sufferers is four years of age, and before death, mental and physical abilities deteriorate rapidly.
In September 2011, when I first met Isabella, her vision was fading but she could still sit up straight and giggled when her toes were tickled.
According to her mother, things have changed dramatically since. Isabella is attending Chapel Road school in Attleborough two days a week and has a packed schedule, but the disease's grip has tightened.
She said: 'Since then pretty much all of her skills have deteriorated. She was still smiling, she could support her own weight and could communicate quite well.
'Things went downhill quickly after that but have slowed down in the last two years.'
That decline has left Isabella blind and in a specially-adapted chair. She eats through a tube that is piped into her stomach, a system which her mother describes as being the hardest change to bear.
But the change in the Alfords' lives has brought some positives.
The family has become heavily involved with the CATS (Cure and Action for Tay Sachs) Foundation, and found a support network of families from around the world who have been affected by the disease.
Indeed, when I meet Isabella, she is the centre of attention at a tea party to raise money for the charity, with support from other families.
The diagnosis has also meant the family has had to try to squeeze fun out of every minute that Isabella has left.
In the last three years she has been on helicopter rides, been on the pitch at Wembley during the half-time of a top-level rugby match and countless other adventures. Her long list of fun outings has been helped by Isabella's defiance of doctor's expectations.
She has overshot her life expectancy by nearly two years, with her sixth birthday approaching in December.
Her mother says the family have already struck off her 'to-do' list, and live day to day.
'We can never plan more than a few months in advance but every free day we have we make sure we are doing something.
'It's been like that ever since she was diagnosed and we just have to live life to the fullest.
'I can't think about what's going to happen, I just think about making her life the best it can be. It's what my life revolves around.'
To donate to the CATS Foundation, go to www.justgiving.com/cureactiontaysachs/Donate
Isabella will be taking part in a Jeans for Genes Day at Chapel Road school in Attleborough on September 19.
Thetford Toy Library loaned toys to Isabella's Tea Party to help the fundraising effort.
Have you got a Thetford story? Contact andrew.fitchett@archant.co.uk
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