Two year old Elodie lives with her mum Tasha in East Yorkshire. Elodie sustained a brain injury at birth, and needs a variety of equipment to support her movement and development. However, as her mum Tasha explains, this equipment can be prohibitively expensive for families with disabled children.
We’re incredibly grateful for Tasha and Elodie for sharing their story with us, and we’re delighted to be able to provide funding for the new buggy which will help them get out and about, making life that little bit easier.
If you can help us help more families like Elodie and Tasha, please donate today.
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.
