Special support day
Life with a rare neurological condition can be very isolating, especially for children and young people. That’s why Evelina London Children’s Charity helped to bring families together for a special support day.
The special support day is for young patients and their families affected by paediatric relapsing demyelinating disorders, a group of rare disorders that can impact a child’s brain and body. This amazing day gave families an opportunity to meet each other, get expert advice and enjoy a fun day packed with activities.
16 young patients and their families came from all over the country for the event, which was held in Ronald McDonald House Evelina London. Families had the chance to meet others who understand what they’re going through, helping them feel less alone. They were also able to swap helpful information and tips.
“It was a breath of fresh air,” said Giannis, who is 17 and lives with a rare neurological disorder called myelin oligodendrocyte glycoprotein.
“Having such a rare condition means I don’t normally meet people like me. Meeting other young people with similar conditions and hearing about their lives was reassuring and put my condition into perspective.”
Families were able to have insightful face-to-face discussions with a panel of experts and access helpful advice. The dedicated psychology teams from Evelina London and Great Ormond Street Hospital for Children (GOSH) were also on hand to talk with families about the impact life with a rare condition can have on mental health. And they chatted with young patients about their experiences and hopes for the future.
“This was a special day, which provided much-needed support and fostered a sense of community among families facing similar challenges from across the country,” said Janet Powell, Evelina London Children Hospital’s Director of Nursing.
Not only did the day create bonds and community, it also helped to empower families to better understand the condition and learn how best to manage them. This combination of support and education can have an incredible impact on those affected. Thank you to the remarkable teams who organised this special support day, a collaborative effort by nurses from Evelina London Children’s Hospital and GOSH.
"Patients with long-term and very rare conditions can feel isolated...but family-centred days like this can help them feel less alone.”
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