Hear from other families

Read below to find stories from families and their children and young people accessing our services.

We are always looking for new stories to illustrate our services and the impact they have on families across East Anglia. If you'd like to share your story please get in touch with Michael Jarvis in our Marketing and Communications Team on michael.jarvis@each.org.uk.

Tracie's Story

Bury St Edmunds mum, Tracie Kirby, conquered her first half marathon last weekend as she took part in the Great North Run – all in aid of the EACH as we support her and her son Lucas.

Tracie, who only started running last year, took on the famous 13.1 mile challenge to raise money for EACH. We provide care and support for her son Lucas through our Quidenham hospice in Norfolk. Lucas is 11 years-old and has two neurological conditions called Lissencephaly and Microcephaly. He has a range of complex health care needs which mean he requires 24 hour a day care. Lucas is non-verbal and has epilepsy, he is tube fed and prone to recurring chest infections. He also suffers from sporadic apnea episodes where his breathing goes very shallow or he stops breathing.

To help Tracie cope with Lucas’s care needs they have been using services through EACH since he was a year old. Lucas has three monthly home day care sessions to allow Tracie to relax, catch up on sleep and, more recently, to train for her running challenge.

Tracie Kirby, explained: "Lucas is totally dependant on me for all of his care needs. He has a number of complex care needs meaning that he requires regular physiotherapy for his dislocated hips, suctioning to keep his airways as clear as possible, seizure monitoring and regular repositioning throughout the night as he often wakes in discomfort.

"The care and support EACH give to both Lucas and me just cannot be measured. The visits we receive from EACH allow me to have some ‘me’ time, which lately involved getting out for a run or gives me chance to catch up on some sleep. I really wanted to give back to this amazing charity that cares for us both so well so last year I signed up for the Bury Colour Dash – I loved it! This year I took it a step further – quite literally – and did the Great North Run.

"I ran for EACH, for Lucas, but also in memory of one of Lucas’s friends Angela who sadly passed away suddenly in December last year aged 15 years young. Her family also used Quidenham for home care and when little Angela passed EACH staff were such a support to her family. They have said that they do not know how they would have got through without the charity’s help.

"EACH provide invaluable support both emotionally, physically and practically to families of special children. The word hospice always conjures up an awful picture in your mind of despair and sorrow when in fact an EACH hospice is the complete opposite. It provides a place to go, a shoulder to cry on, an understanding like no other to those families who find themselves in the worst position in life - being told that their beautiful child is labelled life-limiting. They provide essential care and respite to those families that desperately need it.

"EACH goes above and beyond for special children and their families - the services and care they give means so much."

Tracie continued: "I was so thrilled to complete the run! I did it in 2 hours 47 minutes – which I’m really happy with as I started right at the back in the final pen. Since I started training running has quickly become a release for me – a chance to get away from everyday worries and time for me just to zone out.

  • Renee loves going to The Treehouse, but it’s great that care staff are also able to visit us at home too. Stacy, Renee’s mum
  • When we first heard about the hospice we were apprehensive because we didn’t know what to expect. When we got there we realised it was a lovely place where Renee would be well looked after, and we would be able to have a much-needed break. Stacy, Renee’s mum
  • Children like Lucy don’t get the opportunity to go to sleepovers or to their friends for tea, so the interaction she has at the hospice is priceless. Heather, Lucy’s mum
  • EACH helps us to create lovely memories and has played an important part in all of our lives, not just Lucy’s. Heather, Lucy’s mum
  • EACH has helped us keep Stanley’s memory alive. And allows us to look to the future Brad, Stanley's Dad
  • It’s been a great opportunity to meet other parents in a similar situation, something that doesn't really happen anywhere else. Helen, William’s mum
  • EACH supports families when they’re at their absolute lowest, helping them to come to terms with their child’s illness, losing them and beyond Brad, Stanley's Dad
  • I really love going to the hospice. I’ve made friends there and get to do loads of fun stuff. Renee
  • EACH helped us with coping mechanisms and special ways of remembering Stanley. Brad, Stanley's Dad
  • We arrived at the hospice feeling scared and alone. We had so many questions – they answered them all and more. Claire, Jacob’s mum
  • I can’t imagine what it would have been like. Nobody should have to, every family should be offered the support we were, and are still getting Claire, Jacob’s mum
  • The play specialists are excellent and I also get inspiration from the activities they organise. Heather, Lucy’s mum
  • We are also supported by the 24/7 True Colours nurses and it’s so reassuring knowing we can call on them whenever we need support or advice Helen, William’s mum
  • I didn’t realise hope was a gift until I became a mum. My little boy taught me many things and that was one of them Claire, Jacob’s mum

The Treehouse

St. Augustine’s Gardens,
Ipswich, IP3 8NS

Milton

Church Lane, Milton,
Cambridge, CB24 6AB

Quidenham

Quidenham , Norwich,
Norfolk, NR16 2PH