Breakfast is a must to help me care for my disabled son, Elijah

What did you have for breakfast

What did you have for breakfast this morning? You’re not alone if you skipped it. After all, life is hectic. Perhaps you feel like you don’t have time for breakfast or you just don’t fancy eating first thing in the morning. Looking at my own life, I’m a warrior mother,… Continue reading

Apert syndrome and Rare Disease Day 2017

Apert syndrome is a very rare condition and as we do every year, Elijah’s Hope is supporting Rare Disease Day. This year the theme is Research. You can read more about the theme on the official Rare Disease Day website Rare Disease Day takes place on the last day of February… Continue reading

A year in hospital: The journey to bring Elijah home

Elijah pictured with his tracheostomy

When Elijah was blue-lighted to Bristol Children’s Hospital on Monday 17th November 2014, I never imagined that he would still be an in-patient 12 months later. If I thought that November was a long month, 2015 felt at times, like a lifetime. It’s only now, almost a year on from… Continue reading

What are you staring at?

“It’s rude to stare.” I bet most children hear this at some point in their early years because, in most cultures, staring is seen as rude. To be on the receiving end can make you feel uncomfortable and exposed, so good manners dictate that we keep our glances short. Why… Continue reading

Elijah’s Hope bed run proves you don’t need superpowers to be a hero

On Saturday 9th July, you will be forgiven for doing a double-take if you come across a merry band of superheroes running a hospital bed through the streets of Bristol. Don’t be alarmed – they’re just doing their bit to make the world a better place. Superheroes from Wonder Woman… Continue reading

Postural Care in Australia: Postural Care Provision for Adults with Multiple Disabilities

conference brochure image

Ahead of our conference, we’re finding out about another keynote speaker and workshop facilitator at Elijah’s First International Conference: The Living University of Postural Care. Bas Jansen is a postural care tutor-manager and seating specialist who will be looking at ‘Postural Care in Australia’ in his keynote speech and exploring… Continue reading

Elijah’s First International Conference: The Living University of Postural Care 26th – 27th November 2015


Elijah’s First International Conference: The Living University of Postural Care 26th & 27th November 2015 Making families equal partners in developing postural care services Listening to Families workshop – this gives you a flavour of what to expect: The Listening to Families workshop will be co-run by Pauline Toohey and… Continue reading

Postural Care Conference Press Release

Life-saving techniques for body posture to be highlighted at first UK international postural care conference Leading experts to stress the vital importance of good postural care for people with disabilities at Bristol-based conference in April Date: Hilton hotel, Bristol, 23/24 April 2014 The UK’s first dedicated international conference on improving… Continue reading

Celebrating our 1st anniversary with exciting two-day workshop

Give voice to your deepest hopes and dreams with MiXiT! “Every great dream begins with a dreamer.” On Tuesday 21st and Wednesday 22nd April, inclusive theatre company, MiXiT, will be running an exciting two-day ‘Dreamer Workshop’, which will culminate in a live performance at the ‘It’s Showtime!’ party to celebrate… Continue reading

View the Apert webinar discussion on grief, loss & depression

This is the second of the webinar series held in partnership with RareConnect. This webinar looks at coping with grief, depression and anxiety - the last taboo.

The death of a child is just about the worst thing that can happen to a parent. When the child has lost their battle with a disability and you have been involved in 24/7 in their care before that, how do other people relate to you over the loss? Have you felt like you've been expected to have a time-limit on your grief? How do you carry on?

Our speakers, Tania Weissberg, Jeannie Ewing and Beth Coleman explore these issues in a frank and moving discussion. If you'd like to join RareConnect, click here for more information