Meet William

When eight-year-old William was born, he was diagnosed with Treacher Collins syndrome - a genetic condition affecting the bones and tissues in the face. He was quickly transferred from a hospital in Bath to Bristol, for specialist care. William had a small, incomplete jaw and cheek bones but has a normal-sized tongue, which blocked his airways. William’s syndrome affects his ability to breathe, eat, speak, and hear, and he relies on hearing aids.

At two weeks old, William underwent a procedure called a tracheostomy, which created a hole in his windpipe to help him breathe. He spent the first three months of his life in the neonatal intensive care unit and following discharge was tube-fed for 18 months.

Mum Kate said, "finding out William’s diagnosis was unexpected. Life after he was born was chaotic and exhausting.”

While Kate stayed in Bristol with William, her husband Nick and their at the time three-year-old daughter, Alex, remained at home in Bath.

“When my husband visited us in hospital, he had to make a round trip of around three to four hours. It was an exceptionally hard first few months and an extremely hard three years, because William was a high-risk baby and infant.”

“I had not factored in how much brain space would be taken up by appointments. We were all over the place and it had a huge strain on us as a family.”

In the first year of William’s diagnosis, the family began receiving support from Family Support Worker, Paisley.

“Before Rainbow Trust the support we got was always for William and never for Alex.”

“Paisley’s support was invaluable. For my daughter having someone to come and see her was really important as she felt very left out. It was really hard for her because she was very little and was having to come second to William and his needs.”

Paisley offered practical and emotional support to Alex, playing with her and helping reduce her isolation.

“Paisley was a very good fit for us, life was very, very stressful and she would spend time with us in hospital so we could focus on what was going on. We needed her energy and fun.”

When Alex began school, the family decided they no longer needed Rainbow Trust’s support. However in 2024 the family were re-referred to Rainbow Trust, because William was due to undergo jaw surgery, and Family Support Worker Michelle started supporting them.

“The community nurse said, ’right, I'm going to be referring you back to Rainbow Trust, because you need all the help you can get’. We knew William’s surgery was going to be very difficult for the family, but also for our daughter, who would really struggle.”

The first procedure took place in 2024 and removed part of William’s rib which was added to his jaw. In 2025 a frame was then inserted into his facial bones and gradually extended over a period of three months, moving his jaw and enabling him to breathe. He could not attend school during this time.

During William’s jaw distraction Michelle’s sibling support was even more valuable, as Alex still had to go to school.

“It was important that Alex had someone she could talk to. Michelle provided that sense of balance to our family. Her support is fantastic. It has not been easy, but Michelle gives her something to look forward to. Their quality time and fun helps her get through the week.”

Kate, William's mum

Michelle supported Alex by taking her on days out, chatting with her, and helping with school drop-offs when Kate and Nick needed to be at the hospital or at appointments for William.

“So much of what we do revolves around William so Michelle turning up and taking Alex out, has helped so much, her support means a lot. It is so nice seeing how excited Alex gets when Michelle is taking her out.”

Michelle also helped Alex adjust to the idea of going to school while William needed to remain at home after having his frame fitted.

“Alex was understandably unhappy about going to school when her younger brother didn’t have to. After William’s surgery, she struggled with what she saw as an injustice of William suddenly not having to go to school.”

Michelle’s support at home also enabled Kate to have some much-needed respite and as a space to talk about how she is feeling.

“Michelle has massively helped me with my mental health. She has helped normalise some of the things I have been grappling with, because she's seen it and understands what we are going through.”

“The mental load for me was enormous, organising everything felt like another job. On top of being a mum I felt like a nurse, educator, advocate, project manager, diarist, facilitator. I'm the organiser, and if I burn out, I don't know what would happen.”

Initially to attend school, William needed at least two people who were trained on site at all times for his tracheostomy – the artificial opening into his windpipe.

“Our focus was on getting William back to school and training staff so that he could be in school safely.”

Kate said that getting William the support he needed, “almost broke us. It almost broke me, actually. God knows what happens to other people.”

William missed a whole term of school, from May to July 2025, due to his frame, so Michelle would come and play with him and do crafts during this time.

“William had to wear the frame for three months, which was very stressful because of the risk of it being knocked and causing damage as it was bolted into his bones.”

“When I introduce people to William, I ask if they've seen the film or read the book ‘Wonder,’ by RJ Palacio because it has been very helpful as a conversation opener to people who have never heard of William’s syndrome.”

The family also attends sibling days-out organised by Rainbow Trust.

“We were lucky enough to go on a canal boat trip last summer which was really nice and a real privilege.”

William had his frame removed in August 2025 and now that the surgery has been successful, his tracheostomy tube has been removed.

There are so many families like William's, that may be feeling so helplessly alone and desperate, who need this specialist support. Please donate today to help us support more families like William's.

Donate now

William's Story

Meet William

Continued support for a family for as long as they need us