“My mother petitioned for a menorah in Southend – and this year, we will be taking Baker to see it!” Mum Caroline shares Baker’s story and their festive plans

Finding out about CF

The only thing I knew about CF was that you needed pats on the back, and that’s literally all I knew. I think it’s the same for my husband, Jon, so when we got told it was CF, it was a massive shock. When the nurse and house visitor came over to give us the news of Baker’s CF, they kept asking us what his poo looked like, and we were like, why are you asking about his poo? But now we obviously know that CF affects the digestive system. But at that time, when they asked us if it was oily or fatty, we were like, it’s baby poo! It wasn’t until he started Creon that we were like, oh, that’s what it’s meant to look like! We didn’t even realise that we were carriers. Jon’s got two older children, and neither of them have CF. My parents are no longer here, so I couldn’t ask them about their background. I tried speaking to my brother, who lives in New York, and he knows he’s not a carrier either because he'd had genetic testing done with his wife. So it was just a huge shock to us.

Celebrating Hanukkah and Christmas

I’m Jewish, my parents are Jewish, and my brother’s actually a Rabbi in New York. With Hanukkah, you have the menorah, which is the candles, and 20 years ago, my mother petitioned for a menorah to be outside the Cliffs Pavilion Theatre in Southend, where we lived at the time! If it wasn’t for my mum, it wouldn’t be there.

Baker wasn’t old enough to appreciate Hanukkah last year, but now he’s a little older we’ll be taking him to the menorah lighting in Southend because it's so close to my family, and it’s very special to us. We probably won’t do the eight nights of Hanukkah, but we’ll do one night and have a little present.

As for Christmas, Jon celebrated it while growing up, so we celebrate it as well. I don’t know if we’ll be spending Christmas with Jon’s family this year or if it will be just the three of us, and then we’ll see the family a few days after. But it’s quite difficult because Christmas is a very family-orientated festival and there’s a lot of food, even on Hanukkah you eat doughnuts! For us, we can obviously eat that, but Baker can’t, so that puts a bit of pressure on us because while we have a full Christmas dinner, Baker will only be able to have his feed.

Adjusting to treatments and physio

We call percussion “pats”, and he’s fine with those. He’s not a drama queen, but sometimes he will refuse to let us touch him. However, he absolutely hates his nebuliser! We’re 99% sure that it’s because of the amount of hospital visits with machines he’s had. During his last visit, he had three general anaesthetics in two weeks, and they were also putting a mask on his face every time. Whenever he woke up, he would always be in pain, so we think he relates the mask to the pain. Now Jon has to do his nebuliser at night when he’s asleep.

When it comes to Creon, though, he’s a champ. We also feed him purée because we don’t want him to lose the sensation of swallowing. When Baker got the feeding tube, we were told that it was indestructible and the best one. Five hours later, Baker had pulled it out.

Documenting Baker’s journey

For us, it was to help people understand what CF is because we had no idea before Baker’s diagnosis, and neither did many of our friends and family. It’s basically for us to raise awareness and also because there are so many people out there who’ve got children with CF, and sometimes it’s quite good to lean on one another. There are loads of pages that we follow and those that follow us. At one point, we had issues with the nebuliser, so we took to Instagram to ask other parents for some help, and many people came back to us with advice. Baker’s circumstances are also different because he doesn’t have an issue with gaining weight, while some people with CF do, so we had a lot of questions about how he found the feeding tube. We are all trying to help and support each other in the community.

Advice for others

It’s a really worrying time. Whenever someone tells you not to Google things, you still do it anyway, and there’s a lot of stuff on there that isn’t accurate. And when you read about CF and how it’s life-limiting, it’s really scary. You don’t know what the future holds, but try not to Google and speak with your team instead. And now, with modern technology progressing in leaps and bounds, you never know what’s around the corner.

Hopes for the future

We hope that he’s happy and healthy and does whatever he dreams of. Currently, he’s obsessed with Elmo and Sesame Street, so I’m hoping that will pass! He’s definitely a tough cookie, and I think that whatever he sets out and wants to do, he will do.

Past research, funded by our incredible supporters, has transformed the lives for many in our community. We’ve made some incredible progress. But we still have so much to do.

Will you join us this festive season to help fund more CF research and help change more lives?

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