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James Hopkins Trust
The children are at the heart of everything we do
Our journey began with a single vision – to make a positive impact on the lives of children who face severe health challenges. Over the years, we have grown and evolved, but our commitment to the children and families we serve remains unwavering.
Our free nursing led respite care for your child can be received in your own home, or at our purpose-built respite centre, Kites Corner in Gloucester, where we offer a variety of activities for children to enjoy. We provide specialist care for babies and children up to the age of 6 who have life limiting or life-threatening conditions whilst also supporting their families.
We currently support over 100 families in Gloucestershire. Since 1989, James Hopkins Trust has helped well over 600 children and their families in every corner of Gloucestershire. James Hopkins Trust is here to create very special, lasting memories.
Summer's Story
Summer was born healthy and met all her early milestones. However, at around four months old, her parents noticed worrying changes. Instead of progressing, Summer began to lose movement, became increasingly floppy, and by five months felt like a rag doll in their arms.
After urgent assessments, genetic tests confirmed the devastating diagnosis: Spinal Muscular Atrophy (SMA) Type 1, a rare and life-limiting condition.
Bristol Children’s Hospital acted quickly. Summer began treatment with Risdiplam and, at six months old, received a one-time gene therapy infusion. The therapy replaces the faulty gene responsible for SMA, helping to prevent further loss of motor neurons, although it cannot reverse damage already done.
Before treatment, Summer could not sit, had no movement in her legs, and had very poor head control. Since receiving gene therapy, alongside weekly private physiotherapy, she has made remarkable progress. She can now roll independently, move her legs again, sit for longer periods, and has significantly improved head strength. These milestones would not have been possible without early intervention.
Despite this progress, gene therapy is not a cure. Summer still lives with SMA Type 1 and will require lifelong support. Her diagnosis had a profound impact on her family. Summer’s mum gave up work to become her full-time carer, managing all aspects of her care, therapy, and medication.
Now two years old, Summer is bright, chatty, and cognitively unaffected. She is increasingly aware that her body works differently, which can be frustrating as her mind knows what she wants to do but her muscles won’t allow it. Her care needs are constant, requiring specialist equipment, regular physiotherapy, and significant home adaptations.
Summer attends James Hopkins Trust, where she can play, socialise, and simply be a child in a safe, fully adapted environment. Her mum says:
‘James Hopkins allows Summer the freedom to explore play and have fun safely. Knowing there are nurses caring for her gives me peace of mind and a rare chance to rest. Summer absolutely loves going- she gets to be herself, play, smile, and just be a kid.’
