Freddie’s story – Shooting Star

Splashing in a pool was an experience Chris and Maeve never thought they would be able to do with their son, Freddie, who was given a tracheostomy at 10 months old.

“He loved bath time in hospital and we’d think wouldn’t it be amazing to be in the water together,” said mum, Maeve.

Freddie was born premature at 26 weeks and diagnosed with chronic lung disease. This sparked nearly a year’s stay at hospital due to a range of health complications, including multiple infections.

“We never felt out of the woods. The tracheostomy was when we started to see a light at the end of the tunnel,” reflects Maeve.

“We’d never seen him smile,” she said, due to medical equipment covering his mouth.

“Then his smiles just haven’t stop,” dad, Chris, added.

“It was a huge adjustment and really isolating coming home because we had to get used to a tracheostomy, ventilator and feeding tubes. Our house became a mini-ICU,” Maeve said. Due to Freddie’s health, he requires 24/7 care.

The family were introduced to Shooting Star through their community nurse. “We were a bit apprehensive because of the word ‘hospice’,” explains Maeve. “You think it’s just end-of-life care, but we were ignorant. We’ve realised it’s so much more.”

“You feel less lonely,” said Chris. “You’ve always got somebody there and have people that understand.”

Maeve and Chris have developed a strong support network meeting other families who are supported by us, which they say has been invaluable.

“It was only when we started going to Shooting Star, we met children with tracheostomies. People try to understand, but I think until you meet people who have shared and lived experience who can offer practical and emotional support, it’s unique,” Maeve expressed.

A dream that’s become reality has been spending family time in a pool. Together, they attend our hydrotherapy sessions at Christopher’s, which provides physical benefits such as helping muscle tone and strength, enabling mobility not possible out of water.

“It allows Chris and I to just be parents and have fun for a little while. Which to be honest, we never get to do in any other situation with Freddie. It’s always one of us being the carer and the other, the parent. When we go swimming, we’re in the pool together and someone else has taken that load, literally the load of the equipment, but also that mental load off for a little while,” Maeve said.

The family also had the opportunity to enjoy more first experiences over Christmas at some of Shooting Star’s special festive events. “I think the highlight was when we went to Hampton Court Palace ice skating, as we thought never thought we’d ever be able to take him ice skating,” shared Maeve.

“It was his first outing in the dark and he absolutely loved it,” said Chris.

“We went on the ice and it was so special for us to see other children, a little older than Freddie, being able to access it so normally. We also were able to take him to the hospice to meet Santa – which was really so cute and things you just take for granted. We’re just so grateful for all the help, and I know it’s the same for other families we’ve met.

“Shooting Star has been a lifeline. We probably wouldn’t have the confidence to do the things we have with Freddie if we hadn’t of had the team around to nurture and help us.”