A West Lothian mum has launched a charity to support families of children with physical disabilities, inspired by her own daughter.
Five-year-old Olivia from East Calder has faced more challenges in her short life than many do in a lifetime.
She is also the reason why her mum, Rebecca Elliott, decided to embark on her new venture.
When Rebecca fell pregnant, Olivia was one of two identical twins. However, due to a complication known as twin-to-twin transfusion syndrome, her sibling was not growing at the same rate.
At 19 weeks, doctors were forced to perform a selective termination.
Further complications followed later in the pregnancy and Rebecca noticed a reduction in movement at 31 weeks.
She said: “(We) went up to triage at the hospital, they observed her and they were basically like we need to get this baby out within the next 20 minutes so I was put to sleep and Olivia was born via an emergency C-section nine weeks early.”
It was the height of the Covid-19 pandemic and Rebecca was unable to have Olivia’s dad with her in hospital.
Initially, Olivia appeared to be doing well and was meeting her milestones. But three weeks after she was born, Rebecca was told a scan had revealed a bleed on the brain that had caused damage.
Rebecca said: “I remember going into my room and a doctor walking towards me and it was just one of those doctors you know when you see them coming you know it’s bad news and I thought oh my goodness.
“The type of brain damage she has, PVL, they explained that it could lead to cerebral palsy.
“I was then just left with this information and you know she was a tiny little baby, my husband wasn’t in the room, and I didn’t even phone him that night to tell him that I had got this news because I just didn’t know what to do with it.”
Olivia was later diagnosed with cerebral palsy. Rebecca says she spent a long time researching what the diagnosis would mean for her daughter’s future, admitting she “spent the whole night googling”.
Olivia began physiotherapy and other treatments early, and the youngster made strong progress.
Rebecca said: “I think around seven or eight months old and she got her rolling over and I think it was from that moment I realised right you know if she can get her to do that we’re going to be okay.”
But last summer, Olivia – then four – faced another major setback. One morning in June, she woke with a headache and began vomiting. Rebecca thought it was a sickness bug at first, but quickly realised something was wrong.
“I sat her here on the sofa and I noticed she kept falling over to one side,” she said.
“I phoned her dad and I was like I’m taking Olivia to the hospital this keeps happening he was like right I’m on my way.
“When I started to then notice her face drooping and when she was trying to speak it’s like she couldn’t get the words out, but when she did get them out they were really slurred.
“At that point I didn’t think stroke because in my head kids can’t have strokes. I had never heard of a child to have a stroke.”
Olivia had, in fact, suffered a stroke, leaving her parents fearful it would undo years of hard work.
Rebecca told STV News: “I was trying to stay strong for her and my husband but deep down I was you know like crumbling inside thinking what has happened to my little girl she’s already been through so much why does this have to happen to her.
“And then I kept answering in my own heads you know if it’s to happen to anyone, this little girl right here, she’s the one that’s going to get through it.”
Remarkably, Olivia returned to school to start primary one shortly after being discharged from hospital and once again faced recovery head on.
“She’s already back on her feet,” said Rebecca. “It’s not that we’ve not looked back but you know it’s looking forward.
“It just makes us so much stronger.”
Rebecca had already been developing the idea of a charity to bring together the information and support her family struggled to find when Olivia was first diagnosed. Her daughter’s stroke ordeal gave her the push she needed to turn that idea into reality.
A website for Olivia’s Steps is already live, designed to help families connect with others, hear real-life experiences, and learn about therapies and treatments.
Rebecca hopes to formally register it as a charity and, in time, help families access care and support they may not otherwise be able to afford.
She told STV News: “I just want to share all that information with other families and I just think that all put on to the one platform makes it so much easier and it makes it a bit more of a community as well.
“I’ve had so many messages like ‘Rebecca you’re amazing, you’re such an inspiration, like thank you for doing this’ and that’s the reaction I wanted.
“That just makes me feel really warm inside and it just gives me that motivation to keep going and just to make it into something, so yeah it’s been very, very good.”
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