Dear Warren,

When people ask us why Nanny Sue and I are looking after you and how we manage to at ‘our age’ its really very hard to know what to say to them. It is harder for us now we’re older than if we were your Mum and Dad. If we didn’t love you as if you are our own boy, we wouldn’t be able to look after you. We know we might not always be able to be happy and smile all the time. We know sometimes you must get fed up with us, but you are the most important person in our lives. You are our family now. You, Nanny Sue and me.

You know there are lots of other people, of all ages, in our ‘big’ family, but they don’t really help us do they? But your Aunts are looking after your cousins and some of them live too far away. Nanny Sue and I only have help from the carers who help us look after you; but it is just a job to them, and as you know, they all leave us after a while.

Did you know there are thousands and thousands of other Nannies and Grandads who look after some of their grandchildren like we do? Some of those grandkids have special needs or disabilities like you, and lots of the kids might be upset or angry because they can’t live with their Mums and Dads. They are all lucky kids though, because their Nannies and Granddads have chosen to look after them. If they hadn’t, most of those kids would have had to go and live with strangers: people who they don’t know. Some might have had to live in special homes with lots of other children.

It must be awful for you sometimes, not being able to talk to us. We know it upsets you because we see it in your eyes. We know you try to hide your frustration from us and we know you listen when we talk to you – mostly! I love your sneaky, crafty sense of humour and you often make Nanny Sue and me laugh and smile. When you do that we are extra-glad you live with us. We want you to stay with us always.

If we were as old as Mums and Dads usually are, we wouldn’t worry so much about what will happen to you as you grow up and become a man. Nanny Sue was 60 last week, and you know I’m not very well. I think you know, in your own way, how we worry ourselves sick about what will happen to you when we can’t be with you any more.

Because we can’t work, we have to rely on money from the government to be able to look after you; to get all the special equipment and some of the help we need. We are frightened that the people in the government will get grandparents like us ‘mixed up’ with people who are looking for jobs and say we can’t have as much money. We are frightened that when you are 18 they will say you are grown up and we don’t need as much money to look after you, even though you will still need just as much care.

We’re also frightened that somebody who doesn’t know us might say we are too old to look after you and take you away from us. I hope that such a situation never happens because we know how much you want to be with us, and I promise I will fight anyone like that as hard as I can.

Perhaps only other Nannies and Granddads know just how we feel, how we worry so much, how scared we are that you might be left alone one day: alone with strangers who don’t know you, and who are only looking after you because it’s their job.

How will anybody who doesn’t know you understand what you want or what you need? How will a stranger know when you want to lie down, want to go out, want something to eat or drink, or watch something different on tv? How will a stranger know which music you like to listen to in bed, in your van or when sitting in your wheelchair? How will a stranger know when you’re sick or just tired?

Nanny Sue and I worry so much about all these things. We worry if the council will really let you stay in this bungalow that was built specially, just for you, or if they’ll just put you in a home because they say it will be cheaper for them. We know you would hate that and it would make you very, very sad.

We worry that someone will say they don’t have enough money to pay for all the care you need now, and will always need. You don’t know what the government is. You don’t know what money is or where it comes from. But you will need to be looked after all the time for as long as you live. Who will make sure you’re looked after properly after we’ve gone? Where will we find someone to do that?

Warren, I’m sure there are lots of other Grandparents who understand exactly what I’m trying to tell you. We all have to hope and pray that you will be looked after just as if it was Nanny Sue and me still with you. You deserve nothing but the best, Warren. But you know that for now, you are safe, cared for and loved, and always will be for as long as Nanny Sue and I can be with you.

Love

Granddad

Warren has Potocki-Shaffer Syndrome (PSS) which is extremely rare with less than 100 known cases in the world and Warren may be the only person in the UK with the condition. As a result of PSS, Warren has particularly complex mental and physical needs and requires lifelong 24-hour supervision.