A seven-year-old boy from Ontario will be among young people travelling to Stackpole for a specialist course designed to help those living with rare muscle conditions exercise safely and confidently

AN INTERNATIONAL group of young people affected by rare glycogen storage diseases will gather in Pembrokeshire next month for a week of specialist outdoor activities and support.

The McArdle’s Experience will take place at the National Trust’s Stackpole Outdoor Learning Centre from Saturday, August 1, until Friday, August 7.

Organised by the charity AGSD-UK, the residential course teaches participants how to manage exercise intolerance, recognise their body’s warning signs and build fitness safely through structured aerobic activity.

The event is now in its sixteenth year and rotates between locations in Wales’ three national parks.

Among those travelling to Pembrokeshire is seven-year-old Everett Vistoli and his family from Kitchener, Ontario, Canada.

Everett has glycogen storage disease type 9d, known as GSD9d, an extremely rare condition related to McArdle’s disease. Both conditions affect the way muscles access energy stored as glycogen.

Everett’s mother, Kendra, said the family first realised something was wrong when he was an infant.

She said: “He had difficulty learning to walk, a delayed and waddling gait, frequent falls and sometimes used his hands to climb up his legs to stand.

“We took him to a paediatrician because we were concerned about the possibility of muscular dystrophy.”

Everett was referred to a neuromuscular specialist and underwent electromyography, genetic testing and a muscle biopsy.

The biopsy showed an accumulation of glycogen and Everett was diagnosed with GSD9d shortly before his fourth birthday.

Kendra said the condition has a significant effect on everyday family life, with activities requiring additional time, planning and patience.

She said: “Everett also struggles with ADHD and tends to want to go, go, go, but then ends up in a boom-and-bust cycle of crashing, being in pain and struggling with physical activity.

“We always have to be mindful of how his body is feeling and what he is capable of each day.

“We avoid activities where we might become stuck if he cannot continue, unless we have a plan to support him if he runs out of energy or is in too much pain.”

Andrew Wakelin, AGSD-UK’s McArdle’s coordinator, devised the walking courses after being diagnosed with the disease himself.

He said Everett would be the first person with GSD9d to attend the course.

“We think there may be only about 50 people worldwide diagnosed with GSD9d, so this is a very special occasion,” he said.

“We host a course for young people and another for adults, each with its own programme of learning and walks.

“Teaching young people to recognise their body’s warning signs and exercise at their own pace is vital in preventing muscle damage and maintaining an active lifestyle.

“We aim to share techniques that make the day-to-day management of McArdle’s easier.

“The walks allow people to put that learning into practice, build confidence and improve their aerobic capacity. The aim is to make walking safe and enjoyable in a friendly and understanding group.”

People with McArdle’s disease can experience severe fatigue, pain and cramping during the first few minutes of exercise because their muscles cannot properly break down stored glycogen.

Continuing through severe pain can cause muscle breakdown and, in serious cases, kidney damage.

However, many people with the condition experience a phenomenon known as the “second wind”. By slowing down or resting when symptoms begin, they may be able to continue more comfortably once the body starts using glucose and fats from the bloodstream for energy.

There is currently no cure, but symptoms can often be managed through education, appropriate nutrition and regular, carefully graded aerobic exercise.

Kendra said the opportunity for Everett to meet others with similar experiences would be invaluable.

She said: “Connecting with and learning from people who have the wisdom and experience to share what helps them most is truly a gift.

“Everett loves the outdoors and hiking. I think he is excited about the challenge of hiking a mountain.

“I am not sure how much understanding he has about his condition and how to manage it, so I am very much looking forward to him learning from people with lived experience who truly understand.”

Val Buxton, chief executive of AGSD-UK, said living with a rare and poorly understood condition could be extremely challenging.

She said: “Events such as the McArdle’s walking courses are a valuable opportunity for those affected to meet people who can relate to their experiences.

“Members of our community have described the connections they have made and the insights gained at these events as life-changing.

“We are extremely grateful to everyone who supports AGSD-UK’s vital work.”

Cover image: Everett Vistoli with his family, who will join participants travelling to Pembrokeshire from around the world.

NEW recruits and familiar faces came together when Pembroke and District Male Voice Choir performed in the evening sunshine at the Cresselly Arms, Cresswell Quay.

A large crowd gathered to enjoy the concert, which included the first public performance by new baritone Peter Lane. Several other recent recruits also gained valuable experience of singing before an audience.

A particularly special moment came during the encore, Elvis Presley’s American Trilogy, when 91-year-old Charlie Hare returned to the first tenor ranks.

Charlie sang with the choir for almost 40 years before retiring and was delighted to meet up with many old friends and fellow choristers.

Musical director Juliet Rossiter selected a varied programme, which also featured another appearance by “The Cheeky Boys”, a group made up of singers from each of the choir’s four sections.

Deputy musical director Ian Williams conducted the Welsh favourite Rachie, while returning accompanist William Lambert and master of ceremonies Matthew John also received a warm welcome.

The concert raised more than £220 towards the choir’s campaign to purchase a portable defibrillator which can be taken to performances and other events.

The total was further boosted by a generous donation from Steve, landlord of the Cresselly Arms.

The choir’s next appearance will be at Pembroke Farmers’ Club Show in Lamphey on Wednesday, August 5.

Sailing, swimming, kayaking and children’s events will feature at the popular village regatta on Sunday, August 9

ONE of the highlights of Little Haven’s summer calendar will return next month, with the village regatta promising a full day of races, activities and entertainment for all ages.

Little Haven Regatta 2026 will take place on Sunday, August 9, featuring sailing races, children’s beach games, open-water swimming, kayaking and paddleboard events.

The day will begin at 9am with a one-mile open-water swim, organised by MUUK Adventures. Entry details are available through the organisation’s website.

A helmsmen’s briefing for the sailing events will take place on the slipway at 10.30am, before the Goultrop Open Handicap race begins at 11am.

A class or handicap race will follow at noon, with the Bahamas Classic Pursuit race getting underway after lunch at approximately 2.15pm.

Children’s games will take place on the beach from 1pm, while the inshore events are scheduled to begin at 3.45pm.

These will include kayak and paddleboard races, with participants encouraged to bring their own equipment where possible, followed by the popular children’s swimming races.

The day’s final sporting event will be Tudor’s Mackerel Race at 5.30pm.

Prize-giving and the raffle draw will then take place on “the Wall” at approximately 6.30pm.

Organisers said timings are approximate and advised visitors to pick up an official programme for full details on the day.

Additional parking will be available in the field next to Atlantic View, between Little Haven and Broad Haven.

Organisers said: “Come along and enjoy a traditional village regatta catering for all ages. Join in the fun, or sit on the wall with a coffee or a cold beer and enjoy the action.”