“You would think the worse thing would be your child dying, but it’s not, it’s you trying to live after it,” says Stacey.

Stacey and Steve lost their son Louie just before he turned two, when he died of sepsis; an infection that can lead to organ failure, after a stay in hospital. Louie had Downs Syndrome and a number of health complications, but his death came as a complete shock.

“Louie was a stunning lad. I was so proud of him.
“Him having Downs was my challenge. My son was going to drive, go to Uni – anything he could have done, he would have done. What hurts me is that he died before he could do all those things,” Stacey adds.

After Louie died he went to the hospital mortuary. “It was horrible. Everyone seemed in a rush and we had to book an appointment to see our son. People kept saying ‘how are you feeling’ – well my son had passed away, what did they want me to say?” says Steve.

A friend suggested they could use the Butterfly suite (rooms where children rest before their funeral, that can be decorated with a child’s belongings, favourite bedding and photos) at Claire House and made the arrangements.
“When we got to Claire House everything changed. Suddenly we were part of a family – not one we wanted to be in, but a great one never-the-less,” Stacey says.

“I don’t think we did anything to arrange Louie’s funeral – it was all the team at Claire House. They did the order of service, showed me things and I just had to said yes. I got a necklace with Louie’s footprint on. It’s little things that make a huge difference.”

Both Stacey and Steve found the support they got from Rachael, a member of the counselling team at Claire House, helped them deal with their grief.  Steve says, “I suffered from a deep depression. I went to work and I just broke down and sat on the floor. I called Rachael and she said, ‘I’ll come and get you’. I don’t know what I’d have done without her. I don’t think I’d still be here.”

Stacey found it hard to accept help at first, “I didn’t feel like I needed counselling. Nothing anyone could say would bring Louie back.  “But Rachael and I would meet and just chat – we didn’t even talk about Louie most of the time. After the sessions I’d feel lighter, I had a bit of peace in my head. When I felt things building up again, I’d call Rachael.”

The Adams’ daughter Ruby has also had counselling at the hospice and attends siblings’ support groups. “Ruby was wonderful with her brother, really caring. After he died she wasn’t even able to say his name. She’s had a lot to deal with and we wanted her to have as much support as possible.

“Ruby has done so much she wouldn’t have done without Claire House. She has been to lots of sibling events and even to a sleepover in the Natural History Museum in London. It’s good for her being around other children who understand a little about what she is going through,” says Steve.

“We’ve had so much from Claire House, we wanted to give something back. One of the proudest things we’ve done is raise the money to to pay for a day’s care at the hospice.
“Now if I see anyone raising money, I tell them what they have done for us and to give it to Claire House,” says Steve.