in safe hands

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 and 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.”