By Nathalie Bonney @nathaliebonney
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Videographer / Director: Per Christian Lind
Producer: Katie Mercer, Ruby Coote
Editor: Thom Johnson
Finley Smallwood may only be four-years-old but she already has over 100,000 followers on social media. At a glance, you’d think it would be because of her on point style and cute matching outfits with her mum, Christina.
But the photos also raise awareness of what it’s like to live with cerebral palsy as a child.
Christina , 33, set up the Instagram account, along with a blog, when her daughter was just a toddler to show what life was like bringing up a child with the condition, as well as a way to connect with others looking after children with cerebral palsy.
She told Barcroft TV: “I was very, very depressed post Finley’s diagnosis and so I spent a lot of hours just scouring the internet trying to find other moms that I could connect with and there really wasn’t that many.
“I found one mom who was a huge advocate for her son, who has a little more severe case of cerebral palsy. And just watching her do these posts I was like, I want to do that too.
“So I started a secret account and I called it FIFI + MO. I didn’t tell my husband, I didn’t tell my friends or family - anybody. I just started posting.”
Social media users rapidly fell in love with Finley’s adorable style; from ballet tutus to slogan tees, with many of the photos showing Finley and Christina wear co-matching outfits. A lot of the photos also show Finley using her walking frame that she uses to move around.
Christina said: “A lot of people think that it is a leg disorder or just a physical disability. It’s actually because she has a brain injury. So, it’s a neurological disorder and her brain is just constantly sending signals to her legs to be flexed and tight.
“With her having cerebral palsy, she basically needs help with almost every single task. We have to help with every single thing physically, 100 percent of the time for the most part.”
Finley, who was adopted from birth, wasn’t diagnosed with cerebral palsy until she was 15 months old. But from the moment she was born, Finley’s health was in jeopardy.
At 31 weeks her birth mother was rushed to hospital as the baby had intraventricular haemorrhaging, or brain bleeding. Born nine weeks premature, by emergency C-section, doctors had already warned Finley could suffer delays and complications to her development.
The first time Christina and husband Josh, 33, saw their daughter she was in an incubator, surrounded by wires and so small she could wear doll’s clothes.
Christina said: “I walked in the room and there was Finley in the little incubator just breathing so slowly and she had all these wires and tubes. She was three pounds and I just instantly fell in love with her and I wanted to climb in there and protect her and just promise her the world.
“The five weeks that Finley was in the hospital after she was born were very difficult for us. We didn’t know if she was going to have severe disabilities.
“Finley was diagnosed with cerebral palsy at 15 months old. Around eight months we sort of knew that that was probably going to be her diagnosis. Although getting the actual diagnosis, like, written on her medical charts was, was shocking. It really was a life-changing moment for us.
“Honestly, when she was diagnosed it sort of gave me a little bit of relief. Now I have a term. I have words to use, to describe what we were going through and I have something to Google and relate to.
“My husband and I knew nothing of cerebral palsy and we didn’t know anybody with it.”
Cerebral palsy is a disorder that affects movement, motor skills and muscle tone, usually caused by brain damage to a baby before or during their birth. Finley specifically suffers from spastic diplegia cerebral palsy with overall Left-Side Weakness. Her movement, posture and balance in her lower limbs are affected and she struggles to walk or stand.
Warned their daughter might never walk and that she would be developmentally delayed, the Smallwoods did everything they could to help Finley, starting infant therapy at just three months old. Since then she has done occupational and physical therapies, stretching programs, had Botox injections and worn day and night braces.
Christina said: “Finley has weekly therapies. We are in therapy three times a week. And we do physical therapy, occupational therapy, hippotherapy. And we do Pilates, 'mummy and me yoga'. We’ve tried everything: we had an infant specialist at one point and water therapy, we’ve done it all.”
In October 2016 Finley, whose name means ‘fair warrior,’ underwent a selective dorsal rhizotomy (SDR). During the five-hour operation, nerve fibres in Finley’s spine were cut, blocking the transmitted signals that caused spasticity.
After her surgery Finley was able to wiggle her toes for the first time. Over the next year she practised moving with her walker and sticks and can now stand up herself and take some steps. She has even taken up yoga and danced in her first ballet recital.
It’s likely Finley will need more surgeries and therapies but Christine and Josh are inspired by their daughter’s resilience and progress.
Christina said: “The days are going to be hard. There’s going to be a lot of difficulties and lonely days - and days where you just want to pull you hair out and cry.
“You just literally have to be positive about your life. Because no one’s life is easy but get up, get ready, go out there, let your light shine - and honestly Finley is just a little light.”