“It feels so nice that Thiago was born at a time when everything has come so far”

Baby Thiago was diagnosed with cystic fibrosis (CF) when he was just five weeks old. It came as a big shock to mum Shanique and the whole family, who knew very little about CF at the time: “I think I went through every single emotion,” Shanique tells us. “It was overwhelming, but also there was relief that we finally knew what was happening.” 

Now eight months old, Thiago is doing “really well” with his treatments: “He’s brilliant and so resilient,” says Shanique. “He takes it all in his stride and is into everything. We’re enjoying every good day.”  

Shanique had a normal pregnancy and birth, but they quickly started to realise something was wrong in the first month. “His weight kept dropping and dropping and dropping. Nobody could put their finger on what was going wrong,” she remembers.  

A heel prick test and sweat test followed. “There was lots of waiting, but the medical team decided he needed to start Creon, and as soon as we did that his weight went up,” says Shanique.  

Daily life is a juggle, Shanique admits, but they are getting used to the new CF routine. “We’re learning and adjusting and seeing what he needs. He actually enjoys the physio and is not bothered by it at all. It’s all becoming second nature now.” 

The family have received lots of support from their “amazing” CF team. “They are just brilliant,” she tells us. “They are so important to us and our life. They’ve done wonders for us.” 

Shanique has found the support from their CF psychologist particularly helpful. “He helped me so much post diagnosis with managing all the emotions and knowing that it’s okay to feel all those things,” she explains.  

Shanique is mixed race and passionate about raising awareness of CF in Black, Asian and Minority Ethnic backgrounds. She explains: “On the Trust’s website, I had read the stats about CF in ethnic minorities and was so shocked. I think it’s really important that everyone knows CF is not just a Caucasian condition and people from different ethnicities can also get it.”