Freddie's story: Celebrating our Physiotherapy Team

Becky, Freddie’s mum, said: "Two days after his third birthday, my happy, energetic little boy was suddenly struggling to walk, feed himself, and even hold up his own head."

For seven months after his third birthday, Becky and her family were met with uncertainty, as doctors sought to identify Freddie’s condition.

She added: "The tests were endless, and the doctors were perplexed. Freddie grew weaker by the day, to the point where he was like a newborn. It was the most frightening time, not knowing what was wrong and fearing the worst."

Freddie’s parents were preparing for a diagnosis of a life limiting condition. However, when a subtle rash appeared it provided the missing information experts at GOSH needed to diagnose Freddie with a rare autoimmune condition called juvenile dermatomyositis (JDM).

“While still a serious diagnosis, it meant there was a recognised path forward.”

Becky explained: "From the moment we arrived at GOSH, we knew Freddie was in the best possible hands. The specialists here are world-leaders in Freddie’s condition, JDM, and they immediately put Freddie on a treatment plan of medicines and intensive physiotherapy."

Six months on, Freddie’s making steady progress.

"Where Freddie once could barely move, he now walks around, he is much more independent and can even climbs stairs and can even open heavy doors. The GOSH team has worked tirelessly over the past six months to rebuild Freddie’s strength, triggering new muscle growth, and finding ways for other muscles to compensate."

"If you think Olympic-level coaches have a way of getting the best out of their teams you should meet the GOSH Physio team!”

For Becky, support at GOSH went beyond just medical care. Freddie has also found joy and comfort in the GOSH community of fellow patient families, staff and volunteers.

She said: “Freddie is enjoying himself with all the fun activities, the brilliant birthday celebration and care he's received. This experience has encouraged us to live in the moment, enjoy what we have right now. Freddie’s teaching us that."

"Freddie adores the staff, the fantastic physio team, the cleaners and housekeepers at Weston House, the volunteers and their brilliant weekend clubs, and especially the therapy dogs—he knows them all by name and loves telling me their stories.”

Becky explained how they have been supported by GOSH.

She said: "We've been staying at the GOSH Charity's parent accommodation, Weston House, during Freddie’s treatment and it's been a lifeline. Living in one room together as a family has been a challenge, but we've created a sense of community with the other families facing similar experiences. The children play together, we eat dinners together; it’s normalised this experience for Freddie and created an incredible support structure for us as his parents."

“When we’re settled back home in Leeds, I want to do something to raise money for GOSH Charity and JDM.”

With the Olympics and Paralympics this Summer, Becky and Freddie have been practicing setting off from their own start line in the corridor of Weston House and learning about athletes who have also overcome health challenges as child, like Noah Lyles who had asthma and spent a lot of time in hospital as a child.

Freddie recently took part in a summer club show at Corian’s field, organised by GOSH Arts, getting involved with steel drums and dancing together with other GOSH patients—something that wouldn’t have been possible six months ago.

This month, Freddie started his first day at school, a day Becky feared might not come.

Becky said: “He's getting stronger and he’s getting more independent. Although, he's still vulnerable to getting hurt, so he needs eyes on him. He's been with adults for so long that he thinks he's like a little mini adult—he even asked for a cleaning toy to support the accommodation cleaners! I think he's ready for school now!"