When Joe Hammond was given the devastating news that he had motor neuron disease (MND) he cried for five days straight.
Not for himself, Joe doesn’t do self pity, but for his wife Gill and his young sons James, six, and Tom, 18 months.
MND robs sufferers of mobility. Joe’s illness started with a limp – which he did not even notice at first – but it is so progressive that just a year since diagnosis he is struggling to even feed himself. Gill, 41, has to dress him, along with their two boys.
But, incredibly, Joe, 49, does not focus on how the muscle-wasting disease is affecting him, he is focusing on slowly saying goodbye.
He says: ‘In my life I have loved nothing as much as being a father. To not be part of my children’s future is really, really painful for me. My boys love our family and being part of their family, they are very happy boys.
‘But now they go to their mum because their mum can offer them what they need and I can’t.
‘It’s a very mixed feeling for me. Part of me feels like it’s a really good thing because they’re going to lose me. The children are adjusting and getting what they need from their mum.
‘I see it as preparing for the future and that gives me comfort that they will be okay. Emotionally, for me, it’s very painful but it’s something I have to accept and live with.’
However confronting, Joe and Gill know he will not be around to see their sons grow up. He may have just two more years with them.
But they will remember him, of that he is certain. Joe is writing birthday cards to James, who is on the autism spectrum, and Tom, to open until they reach their 21st birthdays.
Joe says: ‘A friend of mine lost his dad when he was young and he really felt the loss on his birthdays. He wanted a message from his dad.
‘I knew I shouldn’t have but I felt guilty that I wouldn’t be there. Writing the cards may be difficult but it was something that I could do.
‘Since I started writing about the cards I’ve had lots of correspondence with people who lost their parents when they were young.
‘A company called Recordmenow.org did research and discovered that what children wanted was specific details about their parents.
‘They want to colour in the picture to get a sense of who they are.
‘The younger cards are really silly pictures and doodles. What’s consistent throughout all the doodles is me telling them that I love them, that I always did, that my love for them is part of them, and always will be.
‘I think all the love we feel in life becomes part of us.’
For older birthdays, Joe has filled the cards with anecdotes of things they did together – trips to the woods, places they went on holiday.
‘They are reminders that it was real’, says Joe. ‘Much later there’s reminders of me, my favourite books, where I was born.
‘Someone told me to write the address of where I lived as a child. Little facts about me. It might be something they wonder about later in life. It is very hard to do it.
‘Certainly, for the later ones I know I won’t be alive and I imagine them opening it and I’m not here. It feels like a really good thing to be doing but at the same time it’s very painful.’
The family are living in temporary accommodation while their bungalow is extended and adapted to cope with Joe’s needs.
It’s tough for Gill, a teacher, who is Joe’s full-time carer. She says: ‘When I’m asked how I feel I often don’t know. I protect myself by not feeling too much and I do this by keeping busy. It’s actually very easy in this situation.
‘I’m often told I am brave or strong. I’m not so sure. I’m frightened. It’s so strange to think we used to lead such normal lives but now everything feels so fragile.
‘What I do know is that I want to do everything I can for my boys and for Joe. They are my focus.
‘I tell Tom that life is an adventure and that means there will be good things but also difficulty. This is what makes it an adventure.’
All Joe’s energy is going into the birthday cards which will be stored in a shoe box until he has gone.
He says: ‘I feel blessed. I can’t imagine what it would be like to be alone with this disease. To be loved as much as I am, despite it, makes me feel very fortunate.’
And he adds: ‘Strange as it sounds this is a very, very rich time in my life. I’m fortunate that I’ve had the chance to say goodbye and make plans.
‘The reality is that we’re all dying. It makes life all the more precious.’
Urgent help needed to adapt family home
Joe and Gill Hammond’s life was in London where they lived with their children in a flat.
But Joe's condition has deteriorated to the point where Gill now has to dress him and he now uses a wheelchair. He can just about feed himself but is beginning to struggle to swallow.
Gill is Joe’s full-time carer which means they face significant financial hardship in the darkest of times.
To cope with the challenges ahead the couple bought a bungalow in Petersfield.
Family friend Emma GiIgunn-Jones has set up a fundraising page to help raise the money needed for essential changes to the property
She says: ‘This amazing family were my neighbours for the past nine years. Gill and Joe are the type of people who would do anything for their friends and neighbours.
‘For a loving couple to manage this disease would be painful enough but with two young children it’s almost unimaginable. For the Hammond family there is no avoiding what’s going to happen in their lives. No one can soften this experience for them but we can help them to avoid financial hardship and secure some of the essential items they will need.’
To donate, go to https://uk.gofundme.com/helpthehammondfamily.