Support provided by hospice staff highlighted as part of Children’s Hospice Week

Demelza provides expert clinical care, emotional support and practical help to children with serious or life-limiting conditions and their families.

One of the most important aspects of the support Demelza provides is that families have the confidence to leave their children in the care of experts, who understand their complex conditions and medical needs.

For one couple, this clinical expertise meant their son could attend their wedding and be part of the celebrations.

Aoife, who lives in Greenwich, was in the midst of planning a big wedding to her partner Ben when their son Tom was diagnosed with a rare, genetic mutation on a gene called MORC2.

It’s a spectrum disorder which affects people in different ways. Tom’s neurologist thinks it’s unlikely he will ever walk or move independently, but he might be able to use a power chair because he does have some control of his hands.

Tom has stayed at Demelza which has given Aoife a much-needed break from providing round-the-clock care. This vital support even extended to her wedding day, when Demelza stepped in to ensure Tom could be part of such a special family occasion.

Aoife said: “We got engaged shortly before Tom’s diagnosis and were planning a big wedding a couple of years later, but with his diagnosis it just felt so far away and there was too much anxiety about what was going to happen.

“We decided to do something a bit smaller and obviously we really wanted him to be there, but I was really worried about who was going to mind him.

“Demelza were amazing. We were very lucky – Tom stayed overnight [at Demelza] that weekend and the care team got him ready and took him to the registry office, looked after him during the ceremony and took him to the reception so he could be in the photos.

“Having Demelza there was such a weight off my mind - knowing he was looked after, especially by someone who knows him so well.”

Aoife also says one of the nicest things about being supported by Demelza is the connections she has made with other mums.

She said: “Friends who don’t have kids with complex needs will obviously try and understand as much as they can, but they don’t really know the depth of it. With another Demelza mum, you don’t have to explain – we all know.

“It’s just so nice to have somebody to hang out with who understands all the trauma and it’s great Tom has little buddies to hang out with as well, there’s like a little boys’ crew.”

As well as the vital support Aoife and Ben have from Demelza to help with Tom’s care, the charity has also been supporting Tom’s ongoing development with creative arts therapies.

Aoife said music therapy sessions have been one of Tom’s favourite activities ever and he gets so excited when Demelza’s Music Therapist Pete arrives at their house with all his instruments.

She said: “Tom loves it because he can make sounds with the instruments by himself and have a musical conversation with the therapist, which he is not able to do with words.

“Specialist support, like music therapy, is expensive to fund privately, especially with someone experienced in working with children with complex needs, so that’s really important for us.”