Frankie’s Story

Frankie has been attending James Hopkins trust for over 2 years now, I was a super anxious mum, I had been thrown into a scary world and felt alone, with Frankie being born at the beginning of the pandemic, looking for support seemed impossible.

His health visitor referred him over and despite not being able to attend straight away I had regular phone calls which was really comforting, they became a support network, despite the challenges being faced with trying to navigate the pandemic.

His first day came along and I was so nervous, I rang the bell and I cried at the idea of leaving him, we were greeted with warm smiles and understanding, It felt like they already had the love for him.

He quickly settled and has become a part of the furniture, mainly in the sensory room! He’s especially happy when he’s in the sensory room having a lovely cuddle which the nurses and HCAs are more than happy to provide!

All of the staff at James Hopkins do whatever they can to help parents, the support they provide extends far above the little Kites sessions and sleepovers, there is a wealth of knowledge to help families navigate through the complex world we have been thrown into.

They do an incredible number of activities and special days, I never thought Frankie would be part of a nativity or just belong to a place that understands him and respects him for who he is. They see past the scary stuff and see the cheeky, cuddly and huge personality.

The occasion that really stands out is just before Christmas, Frankie was extremely poorly, we always have phone calls offering support and a friendly voice in some of the hardest times we have been through. Frankie bounced back and was heading for discharge for the 23rd of December, the wonderful Shelley came to look after him and saved us from having beans on toast for Christmas Dinner!

Frankie generally has a queue of people waiting to give him the cuddles he loves, I wouldn’t be surprised if there was a cuddle rota somewhere!

Everyone at the James Hopkins Trust treats all of us as family, they love Frankie and are an extension of our family.

I truly believe that even a child as complex as Frankie absolutely deserves respect, dignity and a safe space in which all involved have an understanding, James Hopkins provide all this and more.

More Stories Like This


Matthew’s Story

James Hopkins came into our lives when in all honesty our lives were in total chaos, the world was in chaos, Matthew had spent pretty much most of his life at that point in hospital with his feeding tubes, constant infections and us all trying to get a little boy...

Read Story


Tommy’s Story

Tommy has been with JHT since he was diagnosed at 9 months. He is now 5. This year Tommy graduated from his little Kites sessions as he was starting his next chapter at 'big boy school'. I was distraught. After so many years of Tommy AND I being wrapped in love and...

Read Story

Skip to content