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Maggie was introduced to Alice and Amy from the Claire House planned care team, who were able to offer monthly respite sessions at home.

“Tymon is very sociable. He likes to have people around, especially Alice from Claire House. He loves it when she comes to visit,” said Maggie.

Alice explained: “We have started by supporting Tymon and his family at home. We start each session by having a good chat about how he has been since the last time we saw him. We then let Tymon lead us on what he wants to do. At the moment he loves sensory stories, so I’ll read with him and play whilst mum can relax and do any jobs she wants to.”

For Maggie, who had never left her son with anyone before, building the relationship with the staff at Claire House has been life changing.

“I’ve got no other family here, it is just me and my husband who know how to look after Tymon, which was worrying for me, because if we were to need some extra help, we would have no one.

“We now have Alice. She knows Tymon and understands all of his medical equipment, feeds and medication,” said Maggie.

“We put together a care plan for Tymon. This included all of his medical information, but also his likes and dislikes. Anyone could read it and find out everything they need to know about Tymon and the care he needs, and it helps to give parents like Maggie peace of mind,” said Alice.

“Knowing we have Alice and Claire House makes me feel safe, I feel much better mentally now,” shared Maggie.

“But Claire House don’t just help with planned sessions. I know they are always on the end of the phone if I ever need them. Alice put us in touch with the physiotherapy team at the hospice, who have been to visit to offer advice and support.”

As the relationship and confidence grows, the hope is that Tymon will one day be able to spend time in the hospice.

“I am on the right path; I feel calmer because I trust Tymon is in safe hands. They know how complex Tymon’s needs are and how to look after him. Most importantly, I know Tymon loves spending time with them,” said Maggie.