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.