“Tymon is very sociable. He likes to have people around, especially Alice from Claire House. He loves it when she comes to visit,”
For mum, Maggie, keeping her son Tymon well and out of hospital is a challenge. Here she explains how the hospice team are supporting her and helping to keep Tymon safe at home.
Tymon is a happy, smiley 10-year-old who is full of personality. He loves his soft toys, sensory lights and Paw Patrol is his absolute favourite programme.
Tymon was born with a genetic condition which means he has complex medical needs, including chronic lung disease, a heart condition and developmental problems. He is unable to walk or talk and is fed through a tube into his tummy.
“We spent a lot of time in hospital during the first few years of Tymon’s life; it became our home. Tymon was really unstable and we had very difficult conversations with doctors because he did not make much progress.
“It was emotionally draining, but Tymon defied the odds. He’s a little mystery,” said Maggie.
“We now spend more time at home and keeping Tymon happy and well is my main priority. Even a small infection or minor illness can mean he ends up in hospital on the intensive care unit, which is very scary.
“When we were able to come home from the hospital I did not want anyone around me. I was too scared, I did not want to pick up any infection and then the pandemic started, so we didn’t leave the house for over a year.”
“Tymon is bigger and stronger now, but we still don’t have many visitors. I try to avoid public places and Tymon does not go to school, instead he has an iPad session once a week.
“Claire House was mentioned to us when Tymon was younger, but in the last two years they’ve become a huge support.”
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 Tymon 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 Tymon 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 piece 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.