29th February is Rare Disease Day! To celebrate this rarest of days we brought together children and families for a Marvellous event.
Two new Roald Dahl rare diseases nurses and charity President Felicity Dahl joined in with a 'Marvellous Superstar Club' event on Saturday.
Hosted by Birmingham Children's Hospital and Roald Dahl's Marvellous Children's Charity the event was for for children and their families affected by rare diseases throughout the UK, More than 150 children and their loved ones came along to share their experiences and have some fun.
Our two new rare diseases Roald Dahl nurses Sian Bicker and Kate Penny-Thomas were central to the day. Sian said:
I am so happy to be a part of the Roald Dahl Nursing family. An event such as today really brings children and their families closer together and enables them to feel supported. It has also been fantastic to meet some of the other Roald Dahl Nurses which makes me feel part of a nursing community.
Roald Dahl's Marvellous Children's Charity President Feliciy Dahl made a special appearance at the event. She met children and parents, and shared stories of her father working as a surgeon at the hospital.
There were exciting activities for children including a sensory bus, a music room and lots of arts and crafts including a graffiti wall. It was an opportunity for children and their families to connect with one another, receive support and have some fun. There was a guest appearance from our very own Marvin the marvellous crocodile and bundles of supporters including Busy Bees who have been raising money for us as their charity of the year.
The day was enjoyed by all who attended and we can't think of a more marvellous way to celebrate Rare Disease Day in 2016.