N HOW CHARITY HELPS HER COPE
People don’t realise the work these hospices do, but they desperately need funding
MUM LORNA COBBETT ON CHESTNUT TREE HOUSE al tube. She cannot regulate her body perature, so can suffer hypothermia, swings of between 34 and 37 degrees ius within hours. he suffers from severe epilepsy, has no ility and it is not yet clear if she is able ee. She also has sensory imbalance, ch means she hates everything from hs to nappy changes with a passion. orna and Steve, who live in Horsham, t Sussex, were struggling to see how would cope with the 24/7 care Essie ded, while giving Roman and Eva the t in life they deserved. But the family were put in touch with Chestnut Tree House when Essie was three months old.
Lorna says: “At the first meeting, I couldn’t stop crying as I was still in shock and so afraid of the future.
“I suppose I was going through a grieving process for the child I had imagined while I was pregnant.
“I quickly realised these people were absolute angels, offering us hope. Our contact Mel explained our options and how to navigate the emotional and physical minefield we were now in. Without Chestnut, our lives would be very different.” The hospice, in Arundel, West Sussex, was set up in 2003 as a charity to help care for children up to 19 years old, with progressive life-shortening illnesses.
It now works with around 300 children and their families across Sussex and southeast Hampshire, providing practical, social and spiritual help. Essie is their youngest patient and Lorna says from their first weekend visit, she has been treated like a princess and showered with so much love and endless cuddles it now feels like a second home to the family. The hospice takes Essie for 14 overnight respite visits a year, something Lorna recently used to allow the rest of the family to take a break to Dubai. “It is testament to the immense trust I have in the nurses that I didn’t even cry when I dropped Essie off at the hospice. I know she loves it and they love her.
“It was strange being away without her though and people kept coming over commenting on our ‘lovely twins’ which was hard.”
The hospice also allows them to spend days there together as a family and the hydrotherapy pool, with its music and lights, has proved very popular with Essie. The couple receive counselling there from the hospice’s chaplain.
Lorna, who works for a PR agency, says: “Right now, I think Essie is happy and enjoying life in her own way.
“I have adjusted my expectations and feel proud when I see her get pleasure from the smallest things or develop in a way that might go unnoticed in another child.” Chestnut Tree House costs £3.5million pounds a year to run, of which only 7% is provided by the government. Lorna said: “I don’t suppose most people realise the fantastic work that hospices like this do until they are in the unfortunate position of needing them, but these places are in desperate need of the funding. “We are spending our first Christmas with the triplets at home as a family and we just have to hope it is not Essie’s last. “Either way, we will be doing all we can to make sure all three enjoy it. I want everyone to learn from Essie not to be scared of a disabled child, but to let her inspire them, as she has me.”