Our Head of Comms and Fundraising, Ellie, writes about what happened when she met Elodie, Oscar, Kayleigh and Ali on a hot day in August, which we were pretending was Christmas, and what she learned from them about how The Aplastic Anaemia Trust can support families.

I met Kayleigh, Ali, Elodie and Oscar on a bright hot day in August. The family had agreed to be the stars of our Christmas appeal, and we took over their home for the day to film a very festive video. Our videographer Sarah and I were greeted from the car by a very excited Elodie, who couldn’t wait to show us her bedroom, where a festive unicorn was standing, covered in fairy lights.

Downstairs, Kayleigh had put up their full-sized Christmas tree, and when dad Ali later emerged to meet us from his garden office, we were delighted to see he was wearing a Christmas jumper.“I have already had some funny looks in video calls this morning!”

It’s not the fist time the family have had Christmas at a funny time - last year their celebrations together were delayed into January as Elodie was in hospital. Elodie and Kayleigh showed me a photo of the crafty Christmas tree they’d made at Great Ormond Street, where a real tree wasn’t allowed.

Ongoing anxiety

On the day we were filming the video, Elodie was nine months post-bone marrow transplant, and doing really well, despite some ongoing concerns about her liver. This was particularly stressful for Kayleigh and Ali because it was an initial diagnosis of hepatitis which led to her AA diagnosis the first time. 

Additional symptoms and illness can be frightening for parents of children who have received treatment for AA before, I’d heard about this from other parents too. You feel you’re on this fragile road to recovery and have to deal with the anxiety of every setback feeling like it could put you back at square one. But Elodie is recovering really well, and all the signs are that the family will be able to enjoy a much more normal Christmas this year. 

The need to support parents with their emotional wellbeing is something I’ve been thinking about a lot as we publish our Rare Voices report this month. Kayleigh also talked about how important it was to be connected to other families and to talk to other parents who are going through similar things to you and your child, which was also a big theme in the report. She was clear that this is one of the biggest benefits of being connected to The AAT - whether that’s in our Facebook group, online chats or by coming to various events. 

Left-out siblings

Something else our team at The Aplastic Anaemia Trust had been talking about a lot this year is support for the siblings of children with aplastic anaemia. So it was lovely to meet Elodie’s little brother Oscar. 

Kayleigh was telling me about how she felt Elodie’s diagnosis and time in hospital had affected the family dynamics, and how Elodie, Kayleigh and Ali had missed celebrating Oscar’s second birthday on the right day because they were in hospital. 

Of course, as we were pretending it was Christmas for the day - there needed to be presents! Sarah and I had wrapped up some gifts for Oscar and Elodie so we could film them being opened.

Earlier that week I’d been chatting to a neighbour of mine about the shoot we were planning, and the fact that I needed to buy gifts for a little girl who had had a transplant and her younger brother. My lovely neighbour wanted to help, so she popped over to my house the next day, having been to the shops and bought a few nice gifts for Elodie.

It was a really sweet gesture, but something I noticed was that she’d only bought very girlie gifts for Elodie, and not bought anything for Oscar, even though I’d mentioned him too. It was a stark reminder of how people, completely unintentionally, don’t think about the child in the family who isn’t ill - and I wondered how many times siblings in the families we’re in touch with get accidentally left out. 

Luckily, I had some goodies from The Aplastic Anaemia Trust Christmas shop - so I could make sure Oscar and Elodie both had plenty of prezzies to open, and we could get that Christmas Day footage!

Super-Rare Max

One of my favourite things to send out to families we’re in touch with is a copy of our Super Rare Max story book, so it was lovely to hear from Kayleigh how useful the book had been. It tells the story of Super Rare Max going into hospital for treatment with aplastic anaemia. 

Kayleigh told me that they read the book with Elodie every day in hospital, and Elodie knew the words off by heart (you can see her reading along in the finished video!) 

It helped Kayleigh and Ali to prepare Elodie for some of the things that might happen - for example they used the book to have a conversation about losing her hair before that happened. In the video, Elodie shows Sarah and me a picture of her when she’d lost all her hair “look that’s when I had no hair”. “What was that like, losing your hair?” I asked. “Good, because I didn’t have to wash my hair.” Everyone laughed.

Zoe from our support team had even sent Elodie a little crocheted version of Super Rare Max that a volunteer had made - so we put him on the Christmas tree so he could feature in the video too.

Playing being poorly

It was a long day filming and it’s always a draining experience to talk about difficult times that your family has been through with a camera pointing in your face. We were so grateful to be filming with Kayleigh, Ali, Elodie and Oscar, they were absolute super stars in the film. Oscar and Elodie were both full of energy, keen to shout “action” at the start of each take (Sarah had made them their own clapper boards) and show us photos and toys. 

For a while in the afternoon, I took Oscar and Elodie out into the garden, so Sarah could ask Kayleigh and Ali some questions without the kids in the room. We threw blankets over garden chairs and made a den, and Elodie insisted we crawl in and “go to bed”. After some exaggerated snoring I gave a big yawn and sat up “time to get up and go to school”. Oscar followed suit, but Elodie stayed put “I’m poorly, I need medicine.”

I was struck by how, at the age when my own nieces love to play house and act out normal everyday things, for Elodie, that game included being poorly and taking pretend medicine. Of course, we all ran out of the den when it was time to go into the kitchen and film the kids doing some Christmas baking.

It was such an honour to spend the day with this delightful, strong, funny family who have been through so much - and still volunteered to star in our campaign, to help us raise the money we need to be there for more families. I’m so excited that as I publish this story, we have just reached our Big Give target for the appeal, which means our community have donated over £5000 in just three days! This will be matched by our amazing Big Give pledgers, who include our friends at Armstrong Richardson and The Hospital Saturday Fund. 

You can still donate in support of the appeal, and it's well worth doing so before the end of The Big Give at midday on Tuesday! The more we go over target, the more likely we are to do well in The Big Give Awards - which could mean even more funding to support our work to support the whole family affected by AA next year. 

WATCH THE FILM & DONATE

With a special thanks to the truly brilliant Sarah from Hack Creative for her hard work creating our video. We think it's as good as an appeal video you'd expect from a huge cancer charity, and have been so proud to share it with everyone this week.