Havens Hospices

July 8, 2015 by Joanna Harrison

When a family has been told that there’s no cure for their loved one’s illness, Havens Hospices can help to make the journey as comfortable as possible, controlling pain and medication, offering respite and caring for adults, babies, children and teenagers at the end of their lives. Their specialist care is free – for as long as is needed – within the home and at their two hospices, Fair Havens and Little Havens.

They’re a registered charity – not part of the NHS – and receive limited government funding.

Toby-Jay was born on 23rd October 2012. When his mum Sam was 35 weeks pregnant a scan revealed he had tumours on his heart and he was diagnosed with Tuberous Sclerosis, a genetic condition which leads to growths on the organs. Toby-Jay has 30 non-cancerous tumours on his brain as well as heart and left eye and they can continue to grow anywhere at any time. As the tumours push on the brain it causes seizures. He also has developmental delay, is registered partially sighted and is on the autistic spectrum. In 2013 Sam, her partner Graeme and Toby-Jay were referred to Little Havens for respite.

Mum Sam says, “When Toby-Jay was eight months old he had a quarter of his brain removed to help ease his seizures, before which he could have up to 90 a day. Little Havens was mentioned to me for respite before he had his surgery. The nurses said we could go there afterwards to try and settle us down so I feel comfortable taking him home but at the time I think I was in denial about his condition. But when we arrived I just thought ‘wow’, I instantly felt relaxed and it was not what I expected at all – it was so much more.

“Toby-Jay just likes the ladies there, he’s a real flirt! For me and Graeme it’s kept our relationship going. Little Havens is the only place we trust to have him overnight or even just for a couple of hours so we can go out together.
“For Toby-Jay he’s got his stress-free mummy. When he goes to Little Havens it’s a relief not to have to do his medications. I’m not ‘nurse mummy’ anymore, I’m just mummy. I can just sit and play with him and not do the night shift, I come down in the morning all refreshed and ready to play with him.
“He loves the swimming pool and the social side is good for him too.”

If you would like more information on Havens Hospices or how you can help visit www.havenshospices.org.uk/getinvolved.

Havens Hospices’ eighth annual Great Pier Swim will take place on Sunday 12th July starting at Chalkwell Beach. For details on how to sign up visit www.havenshospices.org.uk/GPS or call Jason Curtis on 01702 220356.