Maypole Project Opens Counseling and Activities for Batten Families in UK

Families of a child with Batten disease in the U.K. are welcome take part in counseling and other wellness services being offered at no cost by the Maypole Project in a three-year collaboration with the Batten Disease Family Association (BDFA).

Services include one-on-one therapy sessions, as well as sessions tailored to couples, groups, and children, including “play therapy.” Activities and adventures for siblings of a Batten child are also provided.

For a nominal fee, parent can also access special Maypole activities for all their children.

The partnership incorporates the BDFA’s Sibling Sanctuary project that opened earlier this year. This effort seeks to support the brothers and sisters of those who have Batten, a group of rare inherited neurological conditions that can cause vision loss, seizures, and progressive motor and cognitive decline.

“The BDFA is delighted to be able to offer this invaluable new mental wellbeing service to families as well as Sibling Sanctuary,” said Amanda Mortensen, BDFA CEO, in the organization’s announcement. “The Maypole Project’s holistic approach and understanding of the challenge families face in their journey with their children with Batten disease mean their team can offer focused support for families from the point of diagnosis.”

The Maypole Project has been providing emotional and social support to families and children with complex medical needs since 2003, and has worked alongside the BDFA for more than five years, most notably at the organization’s annual conferences.

“In this time, the Maypole Project has developed an in-depth understanding of how the diagnosis of a child/young person in the family with Batten disease turns everyone’s lives upside down, bringing in a new unfamiliar world of treatments, and teams of professionals,” said Sally Flatteau Taylor, the organization’s founder and CEO.

“As everyone is unique and has different emotional response to such impacts, the Maypole Project’s services are designed to be tailored to everyone’s needs. The project’s overarching aim is to provide responsive emotional and social support services which are confidential, professional, holistic, and ongoing.”

The Maypole Project provides family centered emotional support to relatives of people diagnosed with a complicated disease as children — ages 18 or younger — for as long as help is needed. Support is tailored to each family’s needs, and can be provided at home, school, hospice, or in hospital settings. Therapy is provided by qualified professionals and students in their final year of training.

Maypole activities and outings, such as pony rides, are designed to bring children and young adults together to create peer  support and to give parents and caregivers a break. The program also offers drumming workshops, a sports and activities club, a youth club, and a “Buddy Scheme” for patients to ease feelings of isolation.

“The Maypole Project aims to relieve and help preserve the mental and physical well-being of children and young people who have complex medical needs and disabilities and to support their family members as well as others who are affected by their suffering and, in certain cases, bereavement,” Maypole states on a webpage.

Those interested may contact the Maypole Project directly at 01689-889889 or through [email protected]. The BDFA can also help to make the connection.

Funding to support this project comes from True Colours Trust, CAF Resilience Fund, and Pedal4Memories.