I just happened to hear Henrietta Spink talking to John Humphrys in On The Ropes on Radio 4. Listening to her story I was amazed that I’d never heard of her before. She’s the mother of two severely, but differently, disabled sons now in their late teens who has battled for the rights of carers. In one article a few years ago she wrote that the only things they’d been given without a fight were two plastic mugs and a toilet seat!

Two years ago, having lost a lengthy High Court case and forced to sell their home the family went to sea for six months in a yacht. In the programme she explains how this was possible and how the sons, Henry and Freddy, were able to do things at sea that they weren’t able to do on land.

Thanks to a professor in the States they are now receiving treatment which is having a profound effect on their behaviour and development. Henrietta comes across as a woman with enormous courage, dignity, perseverance and above all - heart.

It’s well worth a listen if you have access to hearing programmes again on the Radio 4 website. There are also a couple of websites: Henrietta’s Dream, set up when the book of that title was published, and The Henry Spink Foundation. This is a charity set up by the Spinks which offers information to families of disabled children. What a truly inspiring person.

For more information, please visit www.decoda.org