Hayat’s Story

Hayat is mum and carer to her two young sons who were born with Fragile X Syndrome, a genetic condition that can result in developmental delays. She cares for them alongside her husband and works part-time job as a Care Worker, a job she’s had for 22 years. Her eldest son was diagnosed when he was 18-months-old. He also has epilepsy, learning difficulties, is autistic and cannot communicate verbally. In March 2013, her youngest son was born with kidney problems so was rushed to Great Ormond Street Hospital where he spent the first couple of months of his life. He had surgery and was diagnosed with Fragile X Syndrome too. He is doing well now and has started to learn some words. Hayat has kindly shared some of her story.

“The start of my journey was filled with research and trying to get the boys moved from mainstream school to a special school, where I knew they would thrive and get the support they need.

Day to day life varies and depends on how the boys are feeling. We must help them with personal care on top of the usual parental responsibilities and there are many health and school letters and emails to respond to and appointments to attend. The boys like routine and don’t cope well with change so we have to prepare them if we’re going anywhere. I love seeing the boys happy and hearing them laugh.

I’m grateful for the help Carers in Hertfordshire has given me. I found out about the charity through the boys’ school. You helped me access funding (a Direct Payment) which we use for a Care Worker to look after the boys for five hours a week. They usually go to a farm and McDonald’s. During this time my husband and I can catch up on tasks such as shopping.

I’ve also been to some of your carers’ groups and information events. I don’t get out much other than for work, the school run, or for the occasional walk, but look forward to the Carers in Hertfordshire events I attend. I find it useful talking to, and hearing from, other carers, particularly other parent carers ahead of me in their caring journey as it helps me plan for the changes, of which there are many.

Your charity is so important and a lifeline to carers like me with the expert information and support you provide.”