Down's Syndrome made our girlr's health fragile – her cancer was still a shock

Helping my four-year-old daughter into her school uniform, I felt immense pride.

Grace, who was diagnosed with Down’s syndrome at birth, was starting school with her twin brother, Maxwell. 

As I waved them both off at the school gates back in September 2016, I had no idea how much our lives would soon change forever.

Just six weeks later, that November, Grace was diagnosed with cancer – and didn’t go back to school for a year.

Today, since she’s made a full recovery, I’m running the London Marathon for the second time for her – as well as for other seriously ill children and their families whose lives have been turned upside down by cancer.

When Grace was born with Down’s syndrome, and Maxwell wasn’t, I thought – as a family – that we’d been dealt our fair share of shock.

I was wrong.

We were told that Grace’s immunity was low, and she’d be prone to coughs and colds more than Maxwell. That, and she had a higher risk of developing cancer. But we never thought it would actually happen to us.

In January 2016, Grace contracted cellulitis of the face – a bad skin infection, that led her to contract sepsis. After a stint in hospital with antibiotics, she was thankfully fine.

Later that year, she’d got a place at the most amazing village school, and was loving making new friends. But, within a few weeks, she wasn’t quite herself.

At first, I thought it was a bad cold, but it was like she was regressing in areas she’d progressed in – she’d started sleeping during the day, and not functioning at school like she had previously in the past.

Doctors asked if she’d had a bad infection recently, and after explaining about the cellulitis, she was blue-lighted to Great Ormond Street Hospital (GOSH) for countless scans and X-rays. 

Originally, doctors thought she had meningitis, but Grace was eventually diagnosed with ALL cancer – acute lymphoblastic leukaemia – more than likely triggered by the infection. Doctors couldn’t tell me if she’d make it. They simply didn’t know.

If she even got so much as a cold, it could floor her – making her too weak for treatment, and could potentially be fatal. 

Grace spent the next six weeks in hospital, having intensive chemotherapy, and I don’t even know how many invasive bone marrow tests. She lost her long, thick, luscious hair – but kept smiling.

Throughout her treatment, she was so strong and resilient. Was always smiling, bubbling about her friends at school and how she couldn’t wait to go back.

Maxwell was amazing, too – insisting on turning up in his dressing gown like the other sick children on the ward. To be just like his sister.

Sadly, we spent that Christmas in hospital – and four children on Grace’s ward died over the festive period. It broke my heart.

It could’ve been us.

While we were finally able to go home, Grace couldn’t go back to school, and had to be ferried back and forth to hospital appointments, for blood tests, and more treatment almost every week. 

Truthfully, our life got put on hold. The kids missed birthdays, weddings, anniversaries, Easter, Halloween, soft play parties, sleepovers, and we couldn’t go abroad as a family. It was too much of a risk.

But during Grace’s treatment, I picked up running. I’d always enjoyed it, except now – more than ever – I needed to take some time away from hospital wards, and appointments. I took some ‘me time’ to distract myself, and look after my mental health.

In 2018, I ended up running the London Marathon for the first time for a children’s cancer charity and raised £8,000. I wanted to give something back to the people that had helped us.

Then, in January 2019 – the day before Grace’s seventh birthday – her treatment finished, and we gathered a huge group of family and friends to watch her ring the bell. 

Today, I’m running the London Marathon for Rays of Sunshine – a national charity that helps grant critically ill children wishes. I was referred to them while Grace was at GOSH by her nurses.

When Grace finished her treatment, she was told by the charity that she could make one wish – any wish – and they would grant it.

Grace was obsessed with Disney, and had always wanted to swim with dolphins – I thought they’d send us on a boat trip, but I was overwhelmed when I found out that the charity was sending us to Florida for eight days. Grace even managed to swim with a dolphin named Thelma, too. 

We stayed in a place called Give Kids the World Village – a nonprofit resort aimed entirely at kids with critical illnesses. It was incredible – each morning there was a teddy, or book and board game on our pillows. And each night there were parades for Easter, Halloween and Christmas – the big days that Grace and Max had missed during treatment.

Those moments as a family, on our first holiday abroad in years, were so, so special.

It was so emotional.

For this year’s London Marathon, I wanted to train up to 30 miles, but I unfortunately got a hamstring injury at mile 15. Still, I’m determined.

Now, I don’t care about times, or beating my PB – today is about getting over the finish line for the people that have sponsored me. For those kids who, just like Grace, have had a tricky start in life. 

For those who didn’t make it.

So far, in donations both online and offline, I think I’ve made about £4,000 – I feel such pride that it will go towards helping grant children like Grace their wishes after cancer.

Grace is 11 now, and apart from six-monthly hospital check-ups, life is normal. She’ll soon be five years cancer-free.

Today, she’ll be cheering me on at home with family friends, while I cross the finishing line – I’m sure I’ll be an emotional mess (and not to mention, relieved!) at the end of it all.

Your life changes forever when someone you know and love has been diagnosed with cancer. But when it’s your child, it’s even worse. It’s them who suffer the most – missing big life events, and the chance to be a normal kid.

I hope that, today, I make them – and Grace – proud. 

Wish me luck!

As told to Emmie Harrison-West

To sponsor Kelly’s London Marathon run, visit her JustGiving page here: https://www.justgiving.com/fundraising/kelly-sherwood1. For more information about Rays of Sunshine, head to www.raysofsunshine.org.uk

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