TRANSCRIPT

Everything in Elodie’s body works fine, but her brain just doesn’t talk to any of it. So there’s nothing wrong with her eyes, her ears, or her hands, her brain just doesn’t tell them how to work.

My pregnancy was absolutely fine, then she came eight weeks early. She was put on a monitor when we got there and she said that she had had a dip in her heart rate, so they wanted to keep us in overnight for monitoring. Then the doctors came in and said they needed to get the baby out in the next fifteen minutes, so they rushed us down to theatre.

Elodie was taken straight to NICU and then over the next few days, she started presenting with symptoms of an oxygen starvation. She went for an MRI and they then told us that she had a severe brain injury, survival would be rare, she wouldn’t walk, talk, cry or anything. So we were in NICU for 60 days.

I met Scott in Australia about six years ago, he had two children there, they were three and six when we met. When Elodie was born and we got the news that she had a brain injury, and the level of care she’d require… the NHS have to tell you the worst case scenario, and I get that from their point of view. But I think when you’re finding out something as severe as that, it’s probably the worst thing you can do because you lose hope.

I refused to, but he lost that hope. He listened to everything they said and thought, that’s it, that’s our life over. He lost his mum that January and that absolutely floored him, on top of this, and then after a few attempts, he committed suicide in May 2022. He just couldn’t fight any more for her, and he was convinced that she wasn’t going to survive. So, that just left me and her.

So we applied to wheelchair services to get Elodie a chair because by this point, she was starting to show signs of scoliosis, her spine was starting to curve, and she was just in a regular buggy. We went to the wheelchair assessment place and after explaining to them how my knees are really week, I live in a house that is not fit for purpose with a special needs child and I’m on my own and the buggies they were showing me were really cumbersome, they were 25 kilos plus, and the chap just looked at me and went, ‘Yeah, they’re probably not right for you.’

Again I’m back to this fight, now I’m gonna have to fight for a buggy that suits Elodie. So I did some research and found a buggy called the Hoggy Buggy, it’s perfect for Elodie. It’s narrow, it’s half the weight of the other ones, you can turn it so with Elodie’s respiratory issues she can face me. It’s six grand – why? The NHS ones are a fraction of that.

This is Elodie, are you going to say hello? Can you say hello? (Elodie babbles). Good girl!

In Elodie’s two years we’ve been privately fundraising for the majority of her equipment and it’s not just the things that people expect you to fundraise for. She’s on CBD oil to stop her seizures, that’s 500 pounds a month. What I find with fundraising is, you know, you only have a select amount of people you can approach to raise money and you start needing a buggy, you raise money for that or you raise money for a walker and then something else comes along, and how many times can you go to that same pool of people and ask them to help you?

We’ve generously been given the money for the buggy from Yorkshire Children’s Charity and I think what makes them so special is the fact that they understand that it isn’t just a one-off piece of equipment that we will require for Elodie. It was the easiest – of all my battles since Elodie was born, it was the quickest process, it was the easiest process. What you find with having a special needs child is you have to go over and over and over what has happened to you. You didn’t have that with this, it was four really quick questions and I think within a matter of days we had an answer. I got an email when I was at my brother’s house and I burst into tears and said ‘Finally, someone’s on our side’.  

My hopes for the future… I just want her to live. If she can have a life, a pain-free life, then we’ve won, because we were told it wouldn’t happen. As stupid as it sounds, my biggest milestone for her would be to see her smile. Because she’s never smiled before, so that would be her biggest achievement for me, because then I’d know she was happy.

(To Elodie) You’re my life now, pudding. Yes you are.