Cian's story

Cían (10) was diagnosed with Treacher-Collins syndrome at birth – a rare genetic condition affecting the development of the facial bones and tissues. It has affected his cheekbones, jaw and eye sockets.

Lyndsey, Cían’s mum, says: “Cían had his first surgery when he was just weeks old. He had an unstable airway and was unable to breathe safely on his own so was fitted with a tracheostomy. He spent most of the first year of his life in and out of the Sick Kids, and hospital became a home from home for us.

“Since then he has had numerous surgeries, including extensive craniofacial surgeries, which supported him to have his tracheostomy removed.

“Cían has microtia – underdeveloped ears – so is supported with hearing aids and was also born with a cleft palate. He has never been able to eat by mouth so has a gastrostomy which means he is tube fed.

“He has all the challenges of living with a lifelong health condition and the way he has coped has changed over the years. It was easier to keep him entertained in hospital when he was a baby, but he finds it really hard now that he is older.

“He attends numerous clinics and is supported by various teams at the hospital, which can be a challenge at times to co-ordinate. We try our very best to always focus on the positives, sometimes this can be hard and seeing your child in hospital is heart-breaking.

“This year, he missed out on the last week of school term as he had numerous hospital admissions and surgery. This was really difficult for him emotionally and socially. He was really upset missing school sports day. He just wants to do what all his friends are doing.

“We have had such incredible support on our hospital journey and there are people who have walked alongside us since day one. Cían really enjoys visiting ECHC’s Hub, he has been to Christmas parties, and had really nice experiences with the Play Team, especially Lorna.

“This kind of non-clinical interaction is a huge boost to him and really does make his admissions more bearable. Meanwhile, the pull-down beds in the new hospital have made things more bearable for me. You can cope with anything when you’ve had a good night’s sleep.

“Cían will require further craniofacial surgery within the next year which we hope will be enough to see him into adulthood, although we know this may not be the case. He also has various other options for surgery in the future, if he would like them, such as plastic surgery or implantable hearing aids.

“Now that he’s older, it’s important to us that he is able to make his own choices about his treatment where he can. We are so grateful that we have been supported on this journey by all the amazing staff at RHCYP and also ECHC.”

Cían is one of the superstar chefs taking part in our new event ‘Come Dine with ECHC’. Although he is tube fed, he was very happy to get involved to help other children and their families in hospital. Together with teammate Doctor Omair Malik, he has created a Marvel-lous Doctor Strange-inspired main, which he hopes will secure the winning vote from our lucky guests!

Your donations make all the difference to children with lifelong conditions like Cían and their families as they go through the toughest of hospital journeys. If you can, please consider making a donation today.