Zoe Willis

Early onset dementia

Our Story

Two years ago, our family’s life changed in a way we could never have imagined.

My husband, Paul, and I have always been a busy family. We have four children — our twin girls, who are 30, and our 10-year-old twin boys — and we are also very proud grandparents to our beautiful three-year-old grandson. Our lives have always revolved around our family, making memories together and looking forward to what the future would bring.

Until two years ago, Paul was well and life was, as far as we knew, completely normal.

Then Paul became poorly, and after a series of tests and appointments, he was diagnosed with temporal lobe epilepsy. What followed has been an incredibly difficult and frightening roller coaster for all of us.

The last two years have brought problems with medication, seizures, and so many challenges that it has often felt as though we were constantly trying to find our way through the next crisis. Paul has experienced significant cognitive decline, alongside many other changes that have affected almost every part of his daily life.

We kept hoping that we would find an explanation, a treatment that would help, or that things would eventually settle.

Instead, after further investigations and tests, we were given the devastating news that Paul has early-onset dementia.

There are no words to properly describe what it feels like to hear that diagnosis when someone you love is still so young and when you have a family and a future that you had always imagined sharing together.

Dementia is progressive, and that means we are facing a future that none of us are ready for. We don’t know exactly what the coming years will look like, but we know that Paul will need increasing levels of care and support as the disease progresses.

Things that most families take for granted are already becoming difficult. As time goes on, we know there will be more challenges with Paul’s memory, understanding, communication, independence and ability to manage everyday life. Eventually, he may need round-the-clock care, and our family will have to adapt to each new stage as it comes.

For our children, particularly our 10-year-old boys, this is incredibly difficult to understand. They are watching their dad change in ways that are frightening and confusing. Our older daughters are also having to face the heartbreaking reality that their dad’s future is not what any of us expected. And our grandson is growing up with a grandad whose abilities may change as he gets older.

Going through this experience has opened our eyes to just how devastating dementia can be, particularly when it happens at such a young age. We have learned how much support families need, how little is known about some forms of early-onset dementia, and how important research, awareness and specialist support are.

That is why we have decided to fundraise for dementia UK.

We want something positive to come from what has been an incredibly painful chapter in our lives. We want to help raise awareness of early-onset dementia and support the vital work being done to help people living with dementia, their families and carers.

Every donation, no matter how big or small, will help contribute towards making a difference to people and families facing a diagnosis that can turn their entire world upside down.

We know first-hand how frightening it is to face an uncertain future with dementia, and we hope that by raising money and awareness, we can help other families feel less alone and ensure that more support is available to those who need it.

Thank you for taking the time to read our story and for supporting our fundraising.

For Paul, for our family, and for every family facing dementia — thank you.