Matt's Story

To young Matt, Senior Health Care Assistants Chelsea Spencer and Darrell Taylor and their Demelza Community colleagues are, first and foremost, people he has fun with.

Seven-year-old Matt proudly shows the soft toy he recently designed and made. “Chelsea helped me, but I did the sewing,” he says. Today the sun is shining, so there will be no more crafts: “I think Darrell and I will play in the garden this afternoon.”

To young Matt, Senior Health Care Assistants Chelsea Spencer and Darrell Taylor and their Demelza Community colleagues are, first and foremost, people he has fun with. But they are also people he is comfortable to let look after his personal needs, and who he can confide his worries in.

Mum Justine, from Heathfield in East Sussex, explains: “To Matt, they’ve just always been there. He’s grown up thinking everyone has Demelza.”

Matt has complex health needs including chronic renal failure. He needs four litres of fluid a day and is tube-fed. Serious problems were picked up at Justine’s 20-week scan and she and husband John were told the baby was unlikely to reach full term. “But it seems every time we get a worst case scenario he proves them wrong.”

For two years the family juggled long stints in hospital and Matt’s round-the-clock medical care with bringing up three older boys, but when his eldest brother broke his leg so badly he was in a wheelchair for eight months they knew they needed help.

A neighbour told them about Demelza Community and the family found a lifeline. Currently, one of the care team visits them at home four times a week and, having helped to get Matt a part-time place there, they also support staff at the local primary school.

Justine says: “Whatever we have to deal with, I hang on to the thought that we have those hours with Demelza. They become another member of the family. Matt can say things to Darrell he wouldn’t say to me because he wouldn’t want to upset me.

“They involve the other children too, taking them all out, talking to them about their concerns. Other times having them here means I can take the older boys out to lunch, which is something we can never do with Matt.

“As a family, they help us put all the pieces of the jigsaw together.”

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