In the hospital 'days are like years', Olivia's frustrated mother tells ITV News Reporter Rachel Townsend
“We need a home. We can’t keep living like this.”
As Jenna Heary Botham fights back the tears, she is stood over her daughter, using a suction machine to collect her saliva.
Seven-year-old Olivia is unable to swallow and if her throat isn’t cleared, she will choke.
To me, this appears to be an impossibly demanding task, but Jenna has spent the last seven years tending to Olivia’s every need, day and night.
Born with a severe form of epilepsy that affects less than 50 people around the world, Olivia is blind and unable to walk, talk or eat any solid foods.
“We were told she wouldn’t make her first birthday, but she’s still here and she’s fighting so I’m going to keep fighting,” Jenna told us.
In December, Olivia was admitted to Royal Preston Hospital with an infection.
While she was recovering, her family home was deemed unfit for carers and for Olivia, it meant there was nowhere for her to go.
Despite being ready for discharge since January, Olivia cannot leave.
She spends every waking hour on the children’s ward and hasn’t seen the outside world for four months.
'We can't keep living like this,' Olivia's mother Jenna told ITV News
Jenna told us: “While you’re stuck in here, minutes are like days, days are like years. For the last four months we’ve been stuck in this room, I’ve been sleeping on a single bed.
"It’s been hell, just hell…We can’t keep living like this, we’re separated all of the time.
"I have two other children, my son is 10 and he’s asking questions I can’t answer and I feel like I’m failing him.”
Olivia’s dad takes us to their current home, just a couple of miles from Royal Preston. I ask him what the house is like without Olivia.
“It’s not a home,” he says, as he plays with their two other children.
“It feels horrible and it’s just not home anymore.”
The house is not a home without Olivia, her father said
The family’s property is owned by Community Gateway, a not-for-profit housing association based in Preston.
They told us that in 2019 they offered the family a different property but it was refused on the grounds of some minor damp that arose after adaptions were made for Olivia.
Changes were then made to their current family home but Olivia’s health has since deteriorated and they acknowledge that the family now need a larger property.
Louise Mattinson, the executive director of customers and communities told us: “CGA own very few properties which meet these requirements in the areas that the family are willing, and able, to consider and those that we do own do not become vacant very often.
"The first property which became vacant that met the discharge requirements for Olivia was offered to the family.
"This property could accommodate 4-bedrooms but would require the installation of a wet room to meet the discharge requirements and we confirmed we were happy to undertake this work. “The family viewed the property on 6th February 2023 but, unfortunately, declined it as they were not happy with the internal layout and the amount of space they felt it offered. “We were then asked to consider installing a through floor lift and building an extension to make the property suitable for the family’s future needs.
"We are always happy to consider such requests; we have done such works previously, and will continue to do similar works where it is possible, however in this instance it is simply not possible to do the requested works to this property…” She continued: “We appreciate that Jenna, her family and the medical professionals are frustrated that we have been unable to find a suitable home that meets not only Olivia’s discharge requirements, but the family’s future needs as well.
"We are just as frustrated as we recognise that at the heart of this is a little girl, Olivia, who just needs to come home.
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“We have held this property for the family in case they reconsider their decision as it can meet all the discharge requirements necessary to allow Olivia to come home and spend precious time with her family.
"In the meantime we continue to consider each property that becomes available in the hope that something comes up that meets Olivia’s discharge requirements and also the family’s future needs.
"To date, we have had no other properties become vacant that are suitable and we are not aware of any becoming vacant in the coming weeks."
A spokesperson from Lancashire County Council, whose social care team help provide care for Olivia, told us: “We are actively working with the family to come up with a safe solution to the challenges the family are currently experiencing.
"The family have a dedicated social worker who is working closely with all professionals involved in supporting the family to explore the support the family need.
"We appreciate that the current situation must be frustrating for the family and we will continue to work with them and partner in order to achieve the best possible outcome for this family.”
But while the different agencies continue to hold weekly meetings to try and find a breakthrough, Olivia continues to spend her days in a small side room at Royal Preston.
“I’m drained…but I have to keep strong for my children, especially for Olivia," Jenna said.
"If Olivia picks up an infection and it did kill her, my last memories are going to be here.”
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