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For the Mortensen family Chestnut Tree House offers a chance to just be a family. To spend special time together without worrying about keeping an eye on seizures, checking medication or ensuring carers are in place. A safe place to just be.
Mum Amanda and Dad Neil first came into contact with Chestnut Tree House when their eldest daughter, Olivia’s, epilepsy became complex and degenerative. “We knew from an early age that Livvy was autistic and had severe learning difficulties, but the epilepsy started at about five years old,” explains Amanda. “It was well controlled for about four years, then it started to get worse very quickly. Livvy started having daily seizures and was becoming less able to do the things she had previously done.”
Seizures now dominate Olivia’s life. They could come at any time, day or night, so Amanda and Neil are on constant seizure watch. “She’s incredible,” says Amanda. “I’ve read accounts from adults who have these kinds of seizures and they often talk about how a major seizure would mean they have to sleep for the rest of the day. Livvy is having three or four of those a day, as well as smaller ones, and she just gets on with life.”
Olivia is now 17 and attends college locally. She loves music and especially likes going to live shows, something she gets a chance to do through the Umbrella Club – a partnership between Chestnut Tree House and the Brighton Dome – which provides tickets for children with life-limiting conditions and their families.
For Olivia to enjoy these things, however, she needs a lot of help. Whilst she loves food, she gets most of her nutrition through a feed directly into her bowel, and medicine through a feed to her stomach, meaning that only people who are specially trained can look after her. She has no language and limited ability to communicate and has to have all of her personal care needs looked after by another person. All of these things mean that her parents can often forget they are parents and not nurses.
This is where Chestnut Tree House provides a sanctuary for the family. “We like to visit the hospice two or three times a year and always go as a family,” explains Amanda. “We can’t go away anywhere else with Olivia, so this is our only chance to spend some really special time together.
At home we are always on red alert, it’s exhausting. At Chestnut Tree House we don’t have to do that, we can just be parents.”
“Livvy really enjoys the magic carpet room, the garden and the sensory space. She likes to walk around the living areas and to lie down by the toys and she loves meal times there. For a while she was on a special diet to help with her epilepsy and the chefs at the House would make special meals for her, another thing we didn’t need to worry about.”
Olivia has a younger brother and two younger sisters, and they love spending time at Chestnut Tree House too. “They get so much out of it,” says Amanda. “It’s really helped them understand Livvy. They get to spend time doing things with their sister in a safe place that is basically a child’s dream. Harry is 15 now so doesn’t come with us, but when he did he would always find a friend. And the girls always have such an idyllic time, it’s a real treat for them.”