Help Layla To Live Her Best Life

Hi, my name is Ashley. Together with my fiancé Darren we have 3 beautiful children, Darren age 12, Kelsi age 11 and Layla age 4. We live in Larkhall and previously I would’ve said we were a normal family and had a pretty typical family life. Unfortunately that’s no longer the case.

On the 8th of November 2021, at the age of 21 months, our beautiful little Layla was diagnosed with cancer. We were given the devastating news that she had a massive brain tumour and would need emergency surgery to remove it. We were told things no parent should ever have to hear. Layla went through a 10 hour posterior fossa craniotomy where her neurosurgeon was able to remove 100% of the tumour with minimal damage. We thought we were over the worst but tests revealed she had Grade 3 Ependymoma. Unfortunately the treatment she needed isn’t available in Scotland so we had to go to Manchester. We spent 7 weeks in Manchester where Layla endured 33 rounds of proton radiotherapy. We were separated as a family with me spending my time in Manchester with Layla and Darren up here with Kelsi and Darren in an attempt to keep things as normal as possible for them. Layla rang her bell on the 18th of February and we thought our nightmare was over.

The type of cancer Layla has is carried through the spinal fluid, so for that reason she received regular scans of her head, neck and spine to check everything was clear. Unfortunately by some cruel, sick twist of fate, on the 8th of a November 2023, exactly 2 years after her initial diagnosis, we were given the news that Layla had relapsed. Her oncologist advised that while her head was clear, there were now around 8 tiny tumours on her spinal cord. On the 21st of November, at the age of 3, Layla went through her fourth surgery. The surgery took 7 hours and displaced every nerve in her back and bottom. Part of the largest tumour was removed but the rest were inoperable because they’re attached to her spinal cord.

The type of cancer Layla has is rare with only around 30 cases per year in the U.K. and around 400 world wide. The small number of cases makes it incredibly difficult to research meaning very little progress has been made over the last few decades. As a result, our only chance of saving Layla is to put her through another 33 rounds of full craniospinal radiotherapy. The impact of CSI on a child as young as Layla will have devastating consequences for her future. I have spent so many sleepless nights researching different trials, experimental drugs, American research hospitals. Anything and everything I could think of in an attempt to avoid the radiotherapy, the reality is, this is our only option.

Layla will begin radiotherapy at the Beatson and attend every day Monday-Friday until April when she’ll then begin an experimental treatment that is currently being trialled.

Our little warrior is the bravest, smartest, sassiest, funniest and all round delightful wee girl. She absolutely loves life and sees every day as an adventure. She spends so much time in hospital and where most kids would complain, Layla wants to stay longer and do more exploring. Even being in hospital Christmas Day and Boxing Day didn’t phase her. Nothing ever gets her down and her attitude is what gets her through this. It’s what gets us all through it. She’s been defying doctors odds since the day she was born and won more battles at the age of 4 than most adults will ever fight in their lifetime.

Unfortunately, the fact Layla has relapsed as quickly means she’s far more likely to relapse in future.

How can you help?

We don’t know what the future holds but Laylas doctor said it’s important to make memories, not just for Layla, but for her brother and sister too. Unfortunately most of the memories that will mean the most to them are the ones that cost the most too.

Laylas doesn’t need “stuff”, she has everything a little girl could ask for, but she does have one wish. At Christmas she saw an advert for Disneyland Paris and has since been telling everyone that she’s going to Disneyland to meet the princesses in the castle. Her oncologist referred her to the make a wish foundation (and other similar charities) but unfortunately, like most charities, they’re struggling for funding and aren’t able to help with anything outside of the U.K. Most of them have got back to me offering other trips to Alton towers, Legoland etc but I’ve turned them all down because I’d be taking it from another child who might have that at the top of their list.

Layla deserves the world and as her mum it hurts that I can’t give her it, this is where I swallow my pride and ask for help. Our family are already helping to absorb other costs associated with her care and we have friends who are looking at different fundraising events to help in future. We’ve been completely overwhelmed with the support we’ve received and for that we’ll be forever grateful.

We want Layla to experience all the things she would have if she didn’t have this horrible disease. We want her to have the experiences that other families have years to plan and save for. We want her to have fun with her brother and sister. They’ve all had to grow up so fast and we just want them to enjoy being kids again. We want them to have holidays and days out where they can forget about our reality, even if just for a few hours.

It took a lot for me to post this. I had loads of offers from other people who wanted to do it but I wanted it to be my words. There are so many of these go fund me pages and it seems like every day there’s a new one pops up for all kinds of things. I don’t want Layla to be another statistic or another begging post people just scroll past. Things are tight for everyone right now so even if you can’t donate, at least you’ve read her story, you know how much of a warrior she is and one more person knows how incredibly proud of her we are.

Any money raised will be spent giving Darren, Kelsi and Layla amazing memories. It won’t take away the pain and fear we feel, but it’ll allow them to look back in the future, whatever that looks like, and realise it wasn’t all bad. It wasn’t all horrible news and hospital stays, they had some brilliant times too, both now and in the future.

From the bottom of our hearts, thank you.

Love from Team Layla xxx