Our precious son Tommy lived for four years, four months and 27 days.

During that time he brought more joy and sunshine into our lives than we could have ever hoped for.

I’m Dan, Tommy’s dad, and I’d like to tell you about the wonderful care your local children’s hospice, Derian House, gave to my son and to ask for your help to make sure every seriously ill child and their family gets the chance to make memories together this Christmas.

Tommy was born with Down’s Syndrome. We hadn’t had the tests – we didn’t care.

I realised straight away but my wife Charlie didn’t because my eyes disappear when I laugh and so she just thought he had my smile.
But I recognised those certain features. I remember my first thought was “he’ll just be more cuddly.” And he was. Everyone who met him fell in love with him.
Tommy didn’t crawl, or walk straight away. Everything was delayed but I never cared. I just enjoyed Tommy for Tommy.

Although Tommy only had a few words in his vocabulary we knew he’d talk eventually. He was good at sign language and had his own little signs that he’d come up with himself.

When he was two-years-old Tommy started nursery and was a little celebrity. His teaching assistant told me that it would take her half an hour to walk him across the classroom for his afternoon nap because everyone would want a Tommy high-five.

Every day after school we’d watch Mr Tumble. He knew every single episode and would act them out to let us know which one he wanted – he was very particular! Tommy even got to meet Justin Fletcher, who plays Mr Tumble, when they filmed a special episode at Manchester Children’s Hospital. He was so excited to meet his hero!

Tommy’s big brothers Louie, 11, and Reggie, 7, adored him. All three of them used to love wrestling with me in the living room. And they were all football-mad. I run Dan’s Dribblers, a children’s football coaching school in Rochdale, and we would all go to watch our beloved Oldham Athletic Football Club as a family.

It was in September last year when we first noticed something wasn’t right. We were on holiday in France and Tommy was much sleepier than usual, but we put it down to the heat.
When we got home Tommy developed a rash and so we took him to the doctor. They sent us straight to hospital and it was there that they told us he had leukaemia. It all happened so quickly, but even then I thought “It’s OK, he’ll be fine, it’s Tommy.”

The first round of chemotherapy went well, so we were hopeful. But after the second round we were told that Tommy had a gene mutation that protected cancer cells, and that they were increasing.

I remember Louie asked: “Is it like the cancer cells have a shield around them and keep fighting off the chemo?” and our consultant said that was a really clever way of explaining it and that she would use that in future.

By December we’d been given the news that Tommy wasn’t going to make it and we were determined to make our last Christmas together perfect.

We spent Christmas Eve watching Home Alone together with the boys curled up on Tommy’s bed at Manchester Children’s Hospital.

On Christmas Day we managed to come home. The doctors didn’t know if he’d be strong enough, but Tommy was our little warrior.

We ordered Christmas Dinner from a deli down the road and watched the episode of Mr Tumble that Tommy was in, which had been filmed in mid-December. Of course Tommy was the star of the show.

The next couple of months were spent making as many memories with Tommy as we could.

We spent two weeks at Derian House Children’s Hospice in February where Tommy enjoyed swimming in the hydrotherapy pool, relaxing in the sensory room and even doing some baking.

Derian fed us three times and day which really took the pressure off and allowed us to just spend time together making happy memories.

Tommy got to be mascot for our football team, Oldham Athletic, and the players paid us a surprise visit at the hospice to present Tommy and his brothers with medals. It was such a special moment.

Tommy’s condition plateaued and we got to return home, but by mid-March we’d started to notice a deterioration and not long after the consultant said it was time to go back to Derian.

Tommy passed away peacefully at Derian House on 23 March, 2024 with me and his mum lying by his side.

I carried him to the Sunflower Room, which is a special cold bedroom they have where children can lay at rest. I still have the jumper I wore. I didn’t want to wash it because it still smelt of him.

Derian staff decorated the room with all his teddies and put CBeebies on the TV. I don’t know what I’d have done if we’d had to put him in the hospital mortuary and not been able to see him straight away.

Derian let us use one of the family flats so we had our own space upstairs and could come to see him whenever we wanted to.

One night I just stayed there with him all night.

Over the next days we got to make hand and footprints which we now cherish, and family got to visit to say their goodbyes.

The first time the boys got to see him, Reggie jumped onto the bed and gave him a kiss which was heartbreaking. I don’t know how we would have coped without having this time with him.

Derian House continues to support us now, even after Tommy has gone. I’ve started going to the bereaved dads group, which is a great group of guys who all just get it.

September was difficult because Tommy would have been starting at reception class in school and it really got to me. I think about what he would have been like growing up and how much he would have loved school.

I love talking about Tommy even though it gets me upset. Every time I meet someone who has lost a child I’ll always ask “What was their name?” and then ask them to show me pictures of them. I wish people realised how much we still want to talk about our children.

We’re going on a week’s holiday to one of the charity’s luxury lodges at Ribby Hall after Christmas.

We know the staff at Derian will be there for us whenever we need them.

If you can do, please donate to Derian House to help a family like mine this Christmas