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Shottery St Andrew’s School community welcomes Artie Hill, four, who has rare disease Duchenne’s Muscular Dystrophy




THE Shottery St Andrew’s community has taken to its heart the saying that it takes a village to raise a child while welcoming Artie, a very special new reception class pupil.

Last year, Artie’s mum and dad, Carrie and Greg Hill, were given the devastating news that their toddler son had the rare life-limiting genetic disease Duchenne’s Muscular Dystrophy (DMD).

It usually only affects boys as it is carried on the X chromosome, and luckily Artie’s older sisters, Lily, 15, and Linnea, eight, are unaffected.

Historically, boys with Duchenne often required significant personal and medical care by their late teens and rarely lived past their 30s.

But the Hills remain hopeful that Artie’s future is a positive one.

“Medical research and standards of care have made great strides in recent years, and while the future is still uncertain, we remain hopeful,” they said. “We know the road ahead will be challenging, but with the support of our family, friends, organisations like Action Duchenne and the school, we feel better prepared to face whatever comes next.”

When the Herald visited the Shottery school this week, we found Artie happily playing in the garden, with his cheeky grin and energetic enthusiasm he seemed like any other four-year-old.

But Artie’s DMD means he can’t run and hop around in the same carefree way as his classmates, and needs the help of his one-to-one support assistant Ollie James at all times.

The progressive muscle-wasting disease causes increasing physical weakness and has a host of associated symptoms including autism and speech delays.

Artie’s start at Shottery was timely: Saturday (7th September) marked World Duchenne Awareness Day, and in celebration the children all wore something red.

Crazy sunglasses, spotty socks and ruby slippers were proudly on display as the whole school showed their support for Artie in their Wear It Red initiative.

The pupils have even formed a charity committee to help Artie and his family through the challenges ahead.

Artie pictured with assistant Ollie James at Shottery St Andrew’s Primary. Photos: Mark Williamson
Artie pictured with assistant Ollie James at Shottery St Andrew’s Primary.                                                                                                                                      Photos: Mark Williamson

Carrie, who is also a teacher at the school, explained: “After learning about Artie’s diagnosis, many students expressed an interest in supporting Duchenne research.

“The goal is to empower the students to become courageous advocates, encouraging them to raise awareness and funds for causes close to their hearts. Over the next year, they’ll focus on Duchenne, not only raising vital research funds but also becoming voices for people like Artie. It’s heartwarming to see these young advocates step up for such an important cause, learning to lead with compassion and purpose.”

Artie Hill.
Artie Hill.

As children, teachers and assistants gathered to pose for photos for our article, the love and care at the heart of the school’s ethos is easy to see – each child’s needs are thoughtfully attended to.

The support from headteacher Louise Withers and the staff has meant the world to Artie’s family as he takes his first steps into education.

“Artie’s transition to primary school has been a thoughtful and smooth process,” said Carrie. “Before he even stepped into the classroom, the school held transition meetings with his preschool and occupational therapist to ensure his environment would meet his needs. The teaching staff, though new to Duchenne, have taken it upon themselves to study the condition, and the school has arranged for Action Duchenne to conduct training sessions in the new term.

“Over the summer, Louise even met with the local authority to further discuss Artie’s care needs, a level of commitment that truly speaks volumes.

“The school has been exceptional in its inclusivity and support for Artie.

“As I am a teacher at the same school, I am always nearby in case of emergencies, which adds an extra layer of reassurance,” added Carrie.

Artie Hill and family.
Artie Hill and family.

As for how Artie is finding school, the proud mum said: “It’s been a big adjustment, but Artie is settling into school life remarkably well. Despite the challenges of transitioning to a new routine, he’s been making friends and gaining a sense of independence. His positive attitude is inspiring – he takes everything in stride, which is a testament to his resilience.”

Carrie is also looking forward to the school’s expansion and move to a new site on the West Shottery development in 2025.

She added: “The school’s support has been invaluable, and with their upcoming move to a new, more accessible building, Artie’s future here looks promising.”

When Artie was diagnosed in 2023, it came shortly after his sister Linnea was confirmed as having autistic spectrum disorder (ASD) and attention deficit hyperactivity disorder (ADHD).

It would be a lot to handle for any family, but the Hills are finding strength through the support of the community.

“Over the past year, we've come a long way in adjusting to Artie’s diagnosis of DMD,” said Carrie. “While the uncertainty of his future still brings moments of anxiety, we’ve found strength through knowledge, community, and support. Our family, friends, and the team at Action Duchenne have been incredible pillars of support, offering guidance and connecting us with other families who truly understand this journey.

“We attended the Action Duchenne International Conference last November, which was transformative for us. It provided invaluable insights into the latest research and introduced us to families at various stages of this journey. We left feeling better equipped, not just with knowledge but with a sense of community.”

Carrie continued: “The entire family felt welcomed, with our older daughter Lily enjoying a music session led by Harry Hill, the charity’s patron, and finding solidarity with other siblings.

“Our younger daughter, Linnea, who has autism and ADHD, the related needs of which sometimes contrast with Artie’s needs. She is currently awaiting support from the Community Autism Support Service.”

The couple have been active in contributing to the DMD cause, dad Greg joined the board of trustees for Action Duchenne, and Carrie has walked 300km for charity Duchenne UK to raise awareness and funds for research.

Artie pictured with assistant Ollie James at Shottery St Andrew’s Primary. Photos: Mark Williamson
Artie pictured with assistant Ollie James at Shottery St Andrew’s Primary.                                                                                                                                      Photos: Mark Williamson

Carrie said: “This proactive approach helps us cope, as does staying informed. Just last year, Artie was also diagnosed with autism, which, according to research, is linked to DMD due to the absence of dystrophin in the brain. Despite his fatigue, Artie remains ambulatory, though he now uses a wheelchair to conserve his energy. Additionally, he is now steroid-dependent to help preserve his muscle strength, though this comes with side effects like weight gain, weak bones and behavioural changes. Nevertheless, we continue to remain hopeful and proactive.”

Looking to the future, the family have to consider the practical implications of Artie’s worsening mobility – including moving or making costly adaptations to their home near Bridgetown.

“Housing remains a significant concern for us,” said Carrie. “As Artie’s mobility decreases, we will need an accessible home with a larger footprint to accommodate things like wheelchair access, a ground floor bedroom with a wet room and medical equipment. This is an expensive prospect, especially in Stratford, where affordable properties that meet our needs are limited, and local authority support for families in our situation is scarce.

“Again, we’ve been fortunate to have family step in, offering whatever help they can, and for that, we are deeply appreciative.”

She continued: “We are incredibly grateful for the tremendous support we receive from our family, friends, and the broader community. Navigating Artie’s DMD diagnosis has been overwhelming at times, but knowing we have a strong network of people who care about us has made all the difference.

“Family and close friends have been a lifesaver, sometimes arranging visits further afield just to give us a rare break and allows us to spend time together as parents.

“It’s these acts of kindness – whether it’s watching the children for an evening or providing emotional support – that have been invaluable to our family’s wellbeing.

“In short, we could not cope with the challenges we face without the love and support of our family and friends. Their generosity, both big and small, has helped us manage Artie’s condition and maintain a sense of normalcy amid the challenges.”



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