Press – Bury Free Press, September 2011
Isabella made the front page of the Bury Free Press in September 2011 in an article about her living with Tay-Sachs disease.
If you click on the image of the article below you will be able to read the entire story. We have added a few quotes from the interview at the bottom of the page.
In the article we talked about how Isabella was diagnosed with Tay-Sachs in March 2011.
In March, Isabella, from Thetford, was diagnosed with Tay-Sachs disease, a rare genetic disorder which affects around one in 360,000 births a year in the UK – only one or two children. Life expectancy for sufferers is four years of age and, before death, mental and physical abilities deteriorate rapidly.
This time last year, Isabella was living what Deborah calls ‘a perfectly normal life’ – playgroup, children’s television, dinner, bath and bed. She developed like any other 18-month-old, able to toddle from mum to dad and beginning to find her own voice. If anything, she was progressing ahead of time.
It was at that point that Deborah noticed that her daughter’s unsteady steps were not improving and after seeking advice from everyone from their GP to a neurologist, they were told that eye tests revealed a cherry-red spot on her retina – a key symptom of Tay-Sachs. Deborah’s own research told her the extent of her daughter’s condition.
We explained how we are coping with the news since Isabella’s diagnosis and how we are filling our days with lots of activities.
But Isabella is happy, and while she is happy Deborah and James feel compelled to make the most of what time she has left.
“We tried to do a lot this buy flagyl online summer because there is much more scope to do things and we don’t know where we’ll be next summer.
“The next big thing will be her birthday party in December, which we’ve just started planning, because she’s never had one before.
“In general day to day life you might think about doing something and then six months later get round to it. Now, if we think of something we want to do we get on and do it as soon as possible because we don’t have any time to lose.”
Despite her positivity, Deborah knows there is only one outcome to their situation. Now her and James’ future is set on helping those who find themselves in the same nightmare.
We also talked about THE CATS FOUNDATION and the role it plays in raising awareness about Tay-Sachs and the support they provide.
Aside from linking up with fellow Tay-Sachs families, Deborah wants to raise awareness and provide support through the Cure and Action for Tay-Sachs Foundation (CATS).
“Part of the charity is to help families going through it. When people have received a diagnosis there’s not a lot out there but with this charity at least there are some people in this country who can help.
“We also want to raise money so that research can continue, especially clinical trials.”
Isabella is not aware of her condition or fate. Her life has changed immeasurably already, and will change much more in the coming years. For the Alfords, living for the day is a priority, not a cliche.
We would like to thank everyone who has read the article and raising awareness about Tay-Sachs. Finally, we would like to thank the Bury Free Press for producing the article.