Ritchie’s story: Caring for a child with cancer and Down syndrome

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In January Ritchie Farrugia was told his six-year-old daughter Bella had Acute Lymphoblastic Leukaemia also known as ALL. Bella also has Down syndrome and at the time of diagnosis, Ritchie had already been her full-time carer for the last four years.

Cancer Advisor spoke to him about being a dad in a children’s hospital ward and how Down syndrome affects cancer treatment.

What’s it like being a dad in a children’s hospital ward?

The first few months I stayed at the hospital full-time with Bella. My wife’s back is not too good, not that mine was great but, it was better. And plus I’m very close to Bella. I could go for an hour and come back and you could swear I was gone for a month. She was just that excited to see me. It’s beautiful.

What has been the most difficult point for you so far with Bella’s journey?

The beginning, because there are a lot of unknowns. Bella was diagnosed a week before her birthday and a week after my birthday. It was also just after Christmas.

When we heard the news, we had no idea. She had been saying she had a sore stomach and would sometimes go a bit bent over. But it was only about once a day for three days. She wasn’t in that much pain, otherwise she would have kept going on about it because that’s what she does. If she doesn’t get service, mate, she jumps! She’s good like that. I love her. I love her to bits.

Can you tell us about Bella’s Down syndrome and if that affects treatment?

Well, when she got the diagnosis I was thinking, ‘How the hell could this be happening? She has got enough on her plate.’ I thought it was going to go down real bad, but to be honest she was the Queen. She’s the one to lift the doctors up. She was joking around with them, laughing.

Don’t get me wrong, there was the stage where it took seven people to give her medicine: six to hold her down and one to give the medicine. Down syndrome children can be very strong when they want.

Father of a child with cancer and down syndrome

Ritchie and his daughter Bella

But hospitals do love Down syndrome kids. Any therapist that has worked with Down syndrome kids will say to me ‘How are you going? They are beautiful children, aren’t they?’ If you met Bella she would melt your heart. She is an amazing girl.

Because she’s got the Down syndrome I wanted to treat her like a princess for a few years before she went to school and I did. And I think she’s better for it. I said to my wife, ‘I’m connected to Bella I spent four years’ at her beck and call. I’m her slave.’ [laughs]I’m not! But you know I’m there, if she calls me I come running.

When a kid is about to have chemo, the doctors prepare you for the worst. They’re preparing you for war, because they don’t know how it’s going to affect them – especially kids with Down syndrome because all the chromosomes are a bit different. With Down syndrome they can go really bad or really good. There are times when they can’t take the full dosage of medicine too. But Bella is pretty advanced. I’ve been taking her to an occupational therapist and speech therapy. She’s been going really good.

We’re so glad to hear! Do you have a message for other fathers facing childhood cancer?

There are a lot of great dads out there. I’ve talked to a lot of good men at Ronald McDonald House. Talking to people helps you, even if you think you don’t want or need to.

My wife gets a lot of information off the internet. I myself talk to a lot of fathers in the hospital instead. If I saw someone looking a little bit lost I would talk to them. It feels good for a little bit of conversation because sometimes people just don’t know which way to look.

Cancer Advisor has a range of resources for dads, but we’re always looking for more content. Leave a comment below, share your own story or recommend a resource.

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Comments

Adry Awan

Stories like Ritchie’s and the Farrugia family’s are what makes a platform like Cancer Advisor so valuable in my opinion. Such an amazing, uplifting and inspirational read. Bravo to Ritchie for generously sharing his lived experience.

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