News and Comment

Being nurses couldn’t prepare us for being told our son Elijah had myotubular myopathy and was expected to live only a few weeks. We tried for five years for a baby before Elijah was conceived but when he was born...

The majority of children in England with life-shortening conditions, and their families, are being short changed or ignored, our recent survey has found. There are 40,000 children and young people with life-shortening conditions in England, and the number is rising....

There is not a day in my life that goes by where I don't wish I could clone myself, while this would be a somewhat scary prospect for my children it might make my life slightly easier. I describe myself...

Our new animation shows the daily challenges families face caring for a child with a life-shortening condition, and the impact on family life. Through My Eyes raises awareness of the pressures facing families providing round the clock care and highlights the range...

Discovering I was pregnant with Callum was a wonderful, if unexpected surprise; a baby brother for my son Connor! Everything progressed well until Callum suffered oxygen deprivation at birth, resulting in severe brain damage. At six days old, I was...

We're delighted to announce the start of a two-year national partnership with Center Parcs to raise money for children’s hospice services across the UK. The partnership is all about putting families first and helping families caring for a seriously ill...