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One Small Step for Oona

Our families are an inspiration and we just love to share their amazing stories! The year 2020 has proved to be a challenge for us all in so many ways and our families having to find ways to be creative with their fundraising and care plans.

It’s always great to highlight the positivity that has been a real beam of positivity is Oona! Oona lives in Edinburgh with her Mum, Ellie, Dad Chris and Big Brother Ivor. Read on to find out more about this young lady and her therapy journey!

Oona has a neurological disorder which she has had since she was born. The cause is unknown, but a rare form of Cerebral Palsy is most likely. When she was a baby Mum and Dad were told to expect her not to walk, talk, eat or ‘form thoughts’. Mum Ellie told us “We never took this to heart and Oona has responded brilliantly to therapy. Her improvement over time has been just remarkable!”

As part of Oona’s condition, she has been diagnosed with hip, feet and jaw contractures that affect her mobility, her speech and chewing food. Mum Ellie said “Her treatment is ongoing and has involved many surgeries, with some we are still waiting for. Muscle weakness affects her whole body but is most obvious in her legs, and she also has ocular motor apraxia, which affects the movement of the eyes.”

On asking about the realities of living with a child with a Neurological condition, Mum Ellie explained, “As a parent of a child with a physical disability there are struggles, financial, emotional, and physical, but also great, euphoric highs, hilarity and pure love.”

Ellie describes their daily routine as “intense” which includes frequent therapy, hospital appointments and exercises to do daily, “but we do try to make it fun!” Said Ellie. She went onto say, “Regular practice makes all the difference to Oona. We research endless creative ways to improve her speech, her mobility, or her dexterity.”

Ellie and Chris both work freelance at the moment, which means their work schedules fluctuate and don’t often run side by side which has had financial implications for the family.  Mum Ellie told us, “On top of moving to a new house, we are having to meet some of the cost of home adaptations ourselves.”

Oona’s big brother Ivor is three years older than Oona and Ellie told us that it’s not always easy to balance their very different needs. “They are wonderful friends. They are often found snuggled up together giggling about something!”

We asked Ellie about their family life and what they enjoy doing together! “Oona’s actually a bit of an anomaly in our family! The rest of us like the quiet life, drawing, reading, films, playing music, that kind of thing. We’d not get on a roller coaster if you paid us! But Oona is a total dare devil who would volunteer for anything. She’s not shy, or scared, and she just totally goes for it and loves the limelight. I absolutely love that about her. I have no idea where it’s come from, but I think that spark is going to take her very far in life.”

Our families have challenges and must rely on their loved ones a lot of the time for support. Ellie explains, “Oona’s needs are complex, and it means we can’t really ask friends to care for her or just call a babysitter. When we need help we rely mainly on my mum. We had a bright idea to train our puppy to be an assistance dog, but the reality is that he only assists by eating leftovers, giving cuddles and making us laugh!”

On asking about the family’s main challenges, Ellie explained, “Oona’s greatest desire is to walk, and this is why we decided to fundraise with Tree of Hope. The rarity and complexity of her condition means we have to experiment, we have to try lots of different things. We don’t know what she will achieve, but while she is still making such incredible progress and is so determined, we refuse to limit her by not trying. Oona has started taking tiny steps independently and we know she isn’t finished there, so we just want to keep going.”

Ellie went onto say, “Psychologically Oona is becoming much more sensitive about the fact that she is different. We have started attending some adaptive sports, and we hope that this will give Oona a positive peer group where she will not always feel different. The athletics track is a very unusual scene for our family! Both Chris and I were useless at sport at school. We love that our daughter might just defy the odds and become a track star!”

We want her to be able to live as independently as possible, and to have the confidence to keep grabbing every opportunity that comes her way. She’s an amazing human being, and I just want her to keep kicking down those barriers to have whatever future she chooses.

We asked how their fundraising journey with Tree of Hope is going so far. Ellie told us, “I was very nervous about fundraising. We deliberated for a long time about it, but we needn’t have. Tree of Hope made the process easy and have been hugely supportive. They gave great advice about how to use social media, which I was particularly nervous about, and even got her on the front page of our local paper.”

Ellie also talked about the support from the community and how this has helped. “The support from our community, and their generosity, has been tremendous. When I read people’s comments I feel like everyone is cheering for her, and that helps us keep going. It’s given all of us, including Oona, a huge boost.”

Ellie went onto say “We very quickly raised enough for the item Oona most urgently needed, so her specialist splints and shoes are already updated. The old ones were getting really tight, so this was a huge relief. We picked them up and payments were made to the clinic direct by Tree of Hope. It was stress free for us.”

On asking what advice you would give to families who are looking to fundraise, Ellie said “Just sharing your story, some photos and videos, and sharing the smiles when your child reaches a milestone, goes a very long way. There is a lot of good will, and people really enjoy being part of a child’s journey I think, whether it is helping them to walk, or just seeing them having fun. Families like ours usually don’t have time to organise huge events, but their contacts might be willing to help. Oona’s brother is making badges and soap to sell locally, and their dad has initiated a very exciting project with a record label called Touched Music. They are currently working on a special release in aid of Oona’s campaign, and we are so excited about this!”

See Oona’s fundraising page and you can follow their  journey on Facebook by following Little Red Wheelchair

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