Kerry lives in Plymouth with her 7-year-old daughter, Luna.
Kerry experienced a normal pregnancy with Luna up until the point of going into hospital to be induced 12 days after her due date, where it was picked up that something was wrong.
In the coming days, it became evident that Luna had suffered from a hypoxic brain injury.
Following Luna’s birth, the family were in Derriford hospital for 23 days, where they were made aware that Luna’s brain injury could cause Cerebral Palsy. When Kerry finally got to bring Luna home, she was treated for Epilepsy. As time went on, they had a confirmed diagnosis of dystonic and quadriplegic Cerebral Palsy.
“She can’t do anything herself, she can’t sit, talk or feed herself, I have to do everything for her,” said Kerry.
Luna had a status seizure, a seizure lasting for more than 5 minutes, in May 2021, which was put down to illness at the time. 6 weeks later, Luna’s Dad was admitted to hospital and sadly died a month later due to a catastrophic stroke, leaving Kerry on her own with Luna.
“Mark’s son Max and I had to make the heart-breaking decision to remove life support for Mark. We had been together for 20 years, half of my life. I was a widow at just 40 years old”, said Kerry.
Luna’s epilepsy was worsening, with 4 seizures in 6 months, often leading to hospital visits and sometimes intubation. After what Kerry went through with Mark, this was very traumatic for her. It was during this time period that Luna was referred to Little Harbour.
“We were referred really quickly, and we’ve now been coming for 2 years,” said Kerry.
Kerry already knew children from Luna’s school that had been referred to Little Harbour but didn’t know the full extent of the support that was going to be available to her and Luna.
I had no idea what it was really like. You see snippets from photos, but you don’t get the full effect of it. It is so nice when I arrive, and I recognise the cars.
Kerry and Luna started with a day visit, then came to Little Harbour’s summer festival, ‘Harbourfest’, then had their first overnight stay.
Kerry said: “You don’t know what to expect to begin with, but it just takes a load off, especially when you’re on your own.
Little Harbour provides Kerry with the extra eyes, ears and time that she doesn’t have when she is at home on her own looking after Luna. And it’s the everyday things that Kerry appreciates like a luxury.
“We have to live to a routine for Luna, which leaves me with no routine for myself. It’s very rare that I cook myself a meal, I just end up picking but at Little Harbour you’re looked after as much as your child is. Someone will walk past and ask if you want a cup of tea, or me and Emma, the Chef, will have banter in the kitchen. I’m a fussy eater and they know that!”
Luna’s Epilepsy has continued to get worse over the years and she is now on 2 medications and has oxygen, suction and a monitor for night-time which can bring a lot of anxiety for Kerry.
I’m constantly on high alert, I sleep but with one ear open and if she rolls over or breathes too heavy on the monitor, I hear it but I sleep well at Little Harbour because I know I can switch off.
Kerry has made lots of good friends at the hospice. She followed 2 other mums whose families are supported by Little Harbour, Inez and Sarah, on Instagram for years before being visiting the hospice herself. where they finally met in person.
“My favourite thing about Little Harbour is the company. I’m on my own and Luna is non-verbal, so when she goes to bed it is very quiet. I will sit with the staff yapping in the Lion’s Den for hours when the children are in bed.”
Kerry has also had planned stays with her friends Ruth and Tim at the hospice. Lots of the children under Little Harbour’s care attend Woodlands School in Plymouth, so Luna gets to see her school friends at the hospice.
Luna loves the waterbed in the sensory room and the pool at Little Harbour. Her favourite things are the disco ball and the lights. “She is in her element on that waterbed!”, said Kerry.
With no household chores to be done while staying at the hospice Kerry and Luna make the most of all the activities and things to do and explore during their stays and especially like spending time in the garden which is fully accessible unlike theirs at home.
“There’s something to do all day at Little Harbour and something to entertain her. When I’m on my own at home I have to cook and wash so I don’t have the time to entertain her as there is normal household stuff to be done.
You get here and you just exhale. You can just drop in and out and spend quality time with your child. Rather than it just all being about the care, you can be mother and child.