When your child suddenly becomes ill, everything is thrown out the window
We’d planned a big family Christmas last year, and I was going to make dinner for everybody. But it never happened. What was going to be a cosy time at home turned out to be weeks spent worrying about whether our daughter would ever walk again.
A week before Christmas, our then two year old daughter, Esmae, was complaining about pain in her legs and back to both me and her Dad, Callum. We didn’t think much of it because she’d had a bug a few weeks beforehand. But the following day she was in absolute agony and couldn’t walk so we rushed her to A&E at Sheffield Children’s Hospital.
For two days our little girl was put on morphine to ease her pain and all we could do was sit by her bedside until she showed signs of getting better. We really thought we’d be home for Christmas.
In reality, we were nowhere near going home. Esmae underwent a MRI scan. We were aware that we had a poorly child, but nothing could’ve prepared us for the difference in her when she came back. She was seriously ill. Not only had she lost movement in her legs, she’d lost it in her entire body and was struggling to breathe.
We live in Sheffield, but neither of us drive, and crossing town on public transport takes a long time. It was becoming very clear how poorly Esmae was and the last thing I wanted to do was leave her side. To our surprise we were given a set of keys by the nurses on Esmae’s ward for The Sick Children’s Trust’s Magnolia House. It was just a few twists and turns away from where Esmae was being treated and it was lovely.
The ‘Home from Home’ accommodation is there for families with seriously ill children being treated at Sheffield Children’s Hospital, and it was so different to what I expected. It was homely and there was a Christmas tree up in the living room. We had a room to ourselves where we could sleep in the quiet. We didn’t realise until that point that we really needed the space that Magnolia House provided us.
Esmae’s prognosis wasn’t good. We were told our toddler might never walk again. While the nurses were fantastic, sometimes we needed to step away from the ward to come to terms with what our daughter’s future could look like.
Esmae was diagnosed with a rare disease called transverse myelitis. We think it was caused by an infection, a vitamin D deficiency and the flu jab, which was all too much for her body and caused it to attack itself. And as a result, the fatty white insulating substance that covers the nerve cell fibres in the spinal cord was damaged and caused inflammation on her spinal cord and swelling on her brain.
We couldn’t quite believe our little girl was so seriously ill. Her recovery was estimated to start from 12 weeks. Our worries were far bigger than spending Christmas at home, though we were so grateful that we’d at least be together because of The Sick Children’s Trust. The charity runs two ‘Homes from Home’ in Sheffield. Alongside Magnolia, there’s also Treetop House, which is on the top level of the hospital, where we moved to just before Christmas. Despite being in hospital, there was a lot of magic at Treetop House. The team even left a little present on our bed for Esmae – which was such a thoughtful touch.
Esmae didn’t wake up on Christmas morning alone because we had a ‘Home from Home’. We were there with her. I really don’t know what I would’ve done without Treetop House. It felt like we were always being prepared for the worse outcome whether that be never walking again or having a cardiac arrest. It was a lot to take in but having a space to go to every night, where you could have some peace and also fuel yourself with homemade food helped us cope.
When your child suddenly becomes ill, everything is thrown out the window. We had to stop working, though still needed to pay our bills and put food on the table. But with the help of The Sick Children’s Trust we didn’t have the additional money worries of paying for a hotel, or even paying for travel because the accommodation is free and within the hospital itself. It helps in other ways, too. In the charity’s ‘Homes from Home’ they have fridges so you can buy food to cook, rather than spending on hospital food or takeaways.
We saw in the New Year with Esmae in hospital and have been back a handful of times. Esmae was put on steroids to reduce the swelling on her brain and, while she was on the medication she was fine, but as soon as she came off she relapsed. This has happened twice now, and every time it does her movement gets progressively worse. Every time she relapses, there’s a part of her that will never be the same. She has long term side effects with some of her organs and we’re not sure she’ll ever make a full recovery. But Esmae is OK, and has done so well to overcome all the challenges that she’s faced and we’re so proud of her and feeling positive about her future.
As winter closes in, it reminds us that although last Christmas was hard at least there was a charity that thought about families like ours, whose children unexpectedly fall ill and find themselves in a difficult situation. We didn’t have to face the anguish of thinking that our daughter would be all alone in hospital over Christmas, because The Sick Children’s Trust allowed us to be right there with her.
This year, we’re looking forward spending the day as a family of four – Esmae recently became a big sister to Autumn – and we’re sure Father Christmas will bring her the bath bombs she wants!
To celebrate volunteers' week, we are speaking to a few volunteers across the country who give up their time to help us like Jill, Lynn and Katie who hold a book sale for our Sheffield 'Homes from Home' every month
Every year we help almost 3,800 families by giving them somewhere to stay near their seriously ill child’s hospital bedside. Sign up to receive our email newsletters to stay up to date with how your support is helping to keep families together.