William's Story

Helen Carlson lives in St Ives in Cambridgeshire with her husband Steve, their three year old son William. 

Helen said: “William was diagnosed with several brain development problems during my 20 week pregnancy scan and subsequent MRI scans.

“He has Lissencephaly, Dandy Walker Variant and Agenesis of the Corpus Callosum. As a result, he has complex epilepsy, cortical visual impairment, is gastrostomy fed and has severe global developmental delay. 

“He had trouble responding to medication and was having seizures where he stopped breathing. At one point we were out in the car and William stopped breathing. We had to pull to the side of the road for Steve to resuscitate him before going to hospital. 

“Because of his condition, our consultant advised us not to have him resuscitated in the future and hospital staff were made aware. We were referred to EACH when William was six months old and staff visited us in hospital. It’s just what we needed as we felt very scared about the future. 

“Since then William’s seizures have become more controlled although there are still ups and downs. William has overnight care at the hospice and it’s a great opportunity for us to do some normal things without having to worry about William. He loves going in the hydro pool, sensory room and having music therapy. 

“One of the best things about the hospice is the parent and toddler group. It’s been a great opportunity to meet other parents in a similar situation, something that doesn’t really happen anywhere else. We’re able to discuss things that are relevant to us as parents of children with different needs to other children. 

“Helen, Amy and Jenny who run the group are so good at making the activities accessible and relevant to all the children, so we always feel included. We love being able to attend the hospice Christmas party and other events such as dream night at Colchester Zoo. 

“Having a child with complex health problems can leave you feeling like an outsider but when we’re at hospice events and we see all the other families in similar situations it helps us to know we’re not alone.
 
We are also supported by the 24/7 True Colours nurses and although we’ve not needed to use them much, it’s so reassuring knowing we can call them whenever we need support or advice.

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  • 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
  • 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
  • EACH has helped us keep Stanley’s memory alive. And allows us to look to the future Brad, Stanley's Dad
  • 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
  • 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 really love going to the hospice. I’ve made friends there and get to do loads of fun stuff. Renee
  • 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
  • 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
  • We arrived at the hospice feeling scared and alone. We had so many questions – they answered them all and more. Claire, Jacob’s mum
  • 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
  • EACH helped us with coping mechanisms and special ways of remembering Stanley. Brad, Stanley's Dad
  • 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

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