For our Christmas appeal this year we decided to focus on one of our most important and life-changing events for families with children with bleeding disorders – Newly Diagnosed Weekends. This isn’t just an event, it’s the start of a journey of supporting families every step of the way.
Finding out that you or your child has a bleeding disorder can be a stressful experience, and we’re here to help you to make sense of it all and to welcome you into a supportive and knowledgeable ‘bleeding family’, full of people who’ve been through what you’re going through and want to help.
Newly Diagnosed Weekends are an introduction to our community, which will support families from that moment onwards through all life stages, offering advice, support, resources and a strong sense of community.
For many parents, this is the first time they will spend time away from home since their child’s diagnosis and for most children, it’s the first time they spend away from their parents’ supervision, thanks to our trusted childcare facility. Parents hear from specialist nurses, physiotherapists and psychologists, and youth ambassadors, enabling them to feel more confident in their child’s ability to live a full life, and work alongside their haemophilia centres.
Rosie, who attended a Newly Diagnosed weekend after her son Louie was diagnosed with severe haemophilia at 8 months said:
“What I really wanted to know was what it meant for day to day life, what can I do to make life easier? Going to the Newly Diagnosed Weekend really did change everything for our little family – the relief in meeting other families felt so good.”
“We left the weekend feeling like a weight had been lifted. Like we were part of something, part of a support network, part of a group of people facing the same thing. I didn’t feel lonely anymore. I felt inspired.”
Can you help future families this Christmas? Give a gift of community and help us provide practical and emotional support for the whole family, and potentially change people’s lives. Even a small donation can make a massive difference!
To make a donation, please visit www.justgiving.com/campaign/ChristmasNewlyDiagnosedAppeal
Please note that paper donation forms will be sent out with HQ at the end of November.