Rugeley Photographer Captures Heartwarming National Rare Disease Conference

A professional media creator from Rugeley has captured a moving visual archive of a community fighting for medical recognition, serving as the official photographer for a major national charity event last weekend.

Elisa Matei, the creative force behind Rugeley-based Deer Rugeley, headed to the Wychwood Park Hotel in Crewe on Saturday, 4 July 2026. Her mission was to document the landmark Kleefstra Syndrome UK National Family Conference. Charged with capturing the deeply emotional and celebratory moments of over 30 families from the Kleefstra syndrome community.

Deer Rugeley, the photographer provided a vital visual voice to a community navigating life with one of the UK’s rarest medical conditions.

Kleefstra syndrome is a rare genetic neurodevelopmental disorder caused by a microscopic deletion on chromosome 9 or a mutation in the EHMT1 gene. It typically results in global developmental delays, intellectual disability, weak muscle tone, and significant speech and language difficulties, with some children remaining non-verbal. Because the syndrome is so rare, families frequently face an uncertain journey, navigating complex physical and neurological challenges with limited knowledge of how the condition may progress in their child. 

The national charity behind the event is led by Chairperson Wendy Hocking. For Hocking, the battle is entirely personal. Her journey began in 2014 when her eldest grandson, William, was diagnosed with the condition just after his first birthday.

"When William was diagnosed, the sheer rarity of the condition left his parents with so many terrifying questions,"

Hocking reflects.

"Through the original support network, our family found an absolute lifeline, seeing my son and daughter-in-law connect with other families in the exact same position, changing everything for us. It redefined our understanding of support."

When the charity’s original founders stepped down in 2021 after more than a decade of voluntary service, Hocking refused to let the vital lifeline vanish. Drawing upon her extensive career as a Chief Executive in the voluntary sector, she stepped directly into the leadership breach.

Under Hocking’s strategic guidance, the organization underwent a massive professional transformation. In July 2023, she spearheaded its restructuring into a formal Charitable Incorporated Organisation (CIO), which culminated in achieving formal UK Charity Commission registration (No. 1208059) on 30 April 2024. 

Despite the rarity of Kleefstra syndrome, the charity now supports almost 200 families across England and Wales and is connected to a worldwide community of more than 900 affected families, helping ensure no one faces the condition alone.

Last weekend's conference in Crewe showcased Hocking's commitment to combining expert guidance with family-centred support. Alongside presentations from specialists in speech and language therapy, occupational therapy, psychology, gastroenterology and sleep, attendees heard new research findings on regression and mental health challenges associated with Kleefstra syndrome. Parent discussion groups and family-led talks provided a valuable forum for families to share experiences, practical advice and mutual support.

While parents spent the day attending specialist presentations and participating in parent discussion workshops, their children and siblings were supported by The Wingate Centre in a SEND-tailored, sensory-friendly environment. A family disco led by DJ Jay proved a particular highlight. Using Makaton signing, music and inclusive dance activities, he encouraged children of all abilities to join in, stepping off the stage to dance alongside them.

He also spent time chatting with the children, who were fascinated by his headset microphone and eager to try it on for themselves "For families affected by rare diseases, connection can be just as important as information." says Hocking.

"Our goal is to ensure that while the genetic deletion these children carry may be microscopic, the voice, hope, and future of their community is anything but."

For Elisa Matei behind the lens, the assignment carried profound professional and emotional weight.

"Documenting this weekend wasn't just about taking beautiful portraits; it was about capturing proof of community,"

Matei said.

"Seeing these children communicate triumphs without words, and watching parents finally share a room with people who truly understand their daily lives, was deeply moving. I am incredibly proud to use my lens to help Kleefstra Syndrome UK tell this vital story.

"The permanent visual archive captured by Deer Rugeley will be utilized by the charity to drive national awareness campaigns, expand fundraising efforts, and support newly diagnosed families across the globe."