WHO ARE EMILY’S STAR AND WHAT DO THEY DO?
With the support of the Children with Complex Needs Nurses team in Milton Keynes, Emily’s Star support
families who’ve a child or children with a life limiting or life-threatening illness.
Their aim is to raise awareness of Trisomy 18 - also known as Edwards Syndrome, the UK's second most
common syndrome - and to change the way in which the diagnosis is worded, from ‘incompatible with life’
to ‘life limiting’.
Emily’s Star founder, Katie Elmer, is also keen to make a difference by providing neonatal ‘Emily's gift’
boxes to Milton Keynes’ neonatal unit, which include items for both mum and premature or underweight
babies. Mini Packs are also available for any baby currently in a UK Neonatal unit.
WHAT WAS THE PROBLEM?
All of the families registered with Emily’s Star are deemed vulnerable. As lockdown commenced these
families were advised to self-isolate for 12 weeks, however they were still in need of essential , for
prescriptions to be collected and to be supplied with food parcels etc.
It also became apparent that as soon as restrictions begin to relax, it will be imperative for these
vulnerable families to use face coverings in enclosed spaces and on public transport so that they can
safely attend the many appointments at doctors surgeries and various hospitals.
WHAT DIFFERENCE DID THE APPEAL AWARD MAKE?
As a result of the funding Emily’s Star has been given a lifeline to cover its core, basic costs, and to ensure
that it’s able to continue supporting its families – not just emotionally but also practically, with food
packages and essential items.
The appeal award has also enabled them to order 500 reusable, and therefore environmentally-friendly
face masks for their registered families and the volunteers who support them.
“We consider ourselves exceptionally lucky to be a registered family helped by the kindest and
most loving charity we have ever come across.
At the heart of everything they do, Emily’s Star encourages, supports and enables families to turn
today’s moments into tomorrow’s precious memories.
Even through a worldwide pandemic, the making of memories has always come first… we may not
be able to enjoy the VIP monthly outings which they organise for us right now, but these trips have
been replaced with everything we need to continue to make special, lifelong memories as a family
in our own homes. ”
Quote from Jen Cook, Mum of Riley, a registered child of Emily's Star