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Downing Street reception shines a light on seriously ill children

News and comment

Samantha Cameron last night (1 March) hosted a reception on our behalf at No. 10 Downing Street. The event helped to raise awareness of the needs of the UK’s 49,000 children and young people living with a life-shortening condition. Mum, Amanda spoke at the reception and shared her experiences of hearing the news that her son James had Infantile Batten Disease – a life- shortening condition with no cure.

The reception event was attended by a host of Together for Short Lives supporters and ambassadors including Patron Holly Willoughby, Rebecca Front, William Orbit, and Katie Melua and James Toseland. It was a chance to thank the special guests for their support and commitment to the charity and shine a light on the work still needed to ensure families caring for seriously ill children get vital care and support.

Barbara Gelb OBE, Together for Short Lives CEO spoke at the event about the challenges families face and the charity’s pledge to help them:

“Time is running out for many families. When you know your child’s life will be short, you want to make the most of every moment, and shouldn’t have to struggle to get the support you need.  We’re here to help them negotiate that maze, and to listen and speak up for them when their voices are not being heard.  We can’t change the diagnosis, but together we can ensure that families get the care and support they need to make the very most of their time together.”

Many families caring for a child with a life-shortening condition don’t know which way to turn; they can feel isolated and really struggle to get the support they need. As a lasting legacy for our son James we would love to know that other parents like us will have all the support they need to make their journey the best it can be. I was proud to have the opportunity share my story with Together for Short Lives and speak out for thousands of families like mine – by working together we can change things and help more families to make the most of life – no matter how short it is.

Amanda Harrison, Speaking to guests about her family’s experiences caring for their son James

Read more about Amanda and her family and how they don’t count the days but try and make the days count.

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