Freddie was born in 2023 after a straightforward pregnancy and birth. However, when he was around six months old, his parents began to notice that his vision seemed different. It was the first sign that something wasn’t quite right. As the months passed, they realised Freddie was also struggling to lift his head and wasn’t reaching the physical milestones they had expected. After a year of uncertainty and medical appointments, Freddie was diagnosed with Galloway-Mowat syndrome, an incredibly rare, life-limiting genetic disorder that is so uncommon it remains largely unexplored by medical researchers.
Freddie’s condition causes significant developmental delay and has caused him to develop ataxia which affects his balance, coordination, vision and communication. He is non-verbal, severely visually impaired, and requires constant support with everyday activities. Like many families of children with rare genetic conditions, his parents suddenly found themselves navigating an uncertain future with very few answers.
When he was one and a half, Freddie’s parents brought him in for an assessment with our team. From the day of his assessment, the team saw how smiley and ‘easy going’ he was, loving the toys and songs that were presented. At the assessment, Freddie was noted as being unable to four-point crawl and he was intolerant of being on his back, meaning he couldn’t roll over. He could only stand when held with locked knees and had reduced muscle in his core. He startled very easily at loud noises and lacked a response to choices, inconsistently responding to hearing his name being called.
From the outset, Freddie’s parents were keen for him to access as many of our services as possible, signing up for conductive education/physiotherapy, outreach support, music therapy and hydrotherapy.
From a young age, Freddie’s parents noticed that he had a passion for music, especially acoustic guitar (and sometimes even dance music!). This was certainly proven to be true when he started attending music therapy with Kylie where he was absolutely focussed for his full 30-minute session. Music is an incredibly strong motivating force for helping Freddie to develop his skills. He will track and reach for instruments, using alternating hands to reach for a drum in different positions.
“Through such strong motivation of musical play, he has worked hard on his gross and fine motor skills to access and sound instruments with excitement and joy.” – Kylie, Music Therapist
Music therapy has also proven to be a wonderful way for Freddie to communicate as he vocalises freely along to songs, using his voice to express himself within the framework of the music.
Over the past 18 months, Freddie has made remarkable progress. He can now sit independently, commando crawl, roll over, and is building strength through four-point crawling and supported standing. He has also developed the ability to make simple choices and understand cause and effect using switch-operated toys.
While these milestones may seem small, they have opened up new opportunities for Freddie to communicate, explore his world and become more independent.
During his time with us, Freddie has been unfailingly positive and determined with everything he has done. He is an incredibly resilient little boy who has settled really well into his sessions with us, understanding the routines.
Because of his limited physical abilities, physio can still be challenging for him, but he recovers quickly when upset, showing his determination to learn.
“When he started with us, he could hardly roll over, but he has made excellent progress. Due to his condition, his development is slow but steady. However, as well as developing physically, he has now learned to respond and make choices, which is a great achievement.” – Maggie, Paediatric Physiotherapist
We are proud to provide more than just support for the children we work with. We put work into supporting the whole family with what they need.
“It is not just practical support that Freddie receives, there is lots that goes on behind the scenes too. Help with navigating DLA and EHCP assessments and advice on these is another amazing service that DVLCC provide.” –Anna, Freddie’s Mum
Watching Freddie grow in confidence, develop new skills and find new ways to communicate has been a privilege. Every milestone is a reminder of the life-changing impact of early intervention, and we can’t wait to see what our resident rockstar achieves next.
The Dame Vera Lynn Children’s Charity has been one of the places where we’ve felt completely seen, heard, and supported on Freddie’s journey. Every session has been filled with genuine care and a deep understanding of what Freddie needs to thrive. They’ve helped us celebrate his progress, navigate his challenges, and feel confident as parents in moments that could easily feel overwhelming.
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