Charlie’s story: “I think they’re great and doing a very good job”

“One night, as I went to go to sleep, I noticed my eye was blurry.”

Nine-year-old Charlie enjoys art, using his creative talents to draw figures and paint animals. So, in September 2018, when he was diagnosed with a rare and serious inflammation of the eye called Uveitis, the condition worried Charlie and his family.

Uveitis is inflammation of an important part of the eye called the Uvea. It is often a long-term condition and can cause damage and destruction to the eye. Found too late or left untreated, it can permanently damage the eye, leading to vision loss and blindness.

Charlie explains: “I couldn’t see out of my right eye. It was blurry with big spots and there were lines too. It was not totally black, but I could not see people properly.

When it occurs in children, Uveitis typically does not cause any warning symptoms like eye pain or redness. Reduced vision can often be the first sign and the change in Charlie’s vision suggested he may have had Uveitis for some time already.

Dad William recalls: “We took Charlie to an optician who identified there was a serious issue. After speaking to our doctors, we went straight to the Emergency Department at Sheffield Children’s. He was seen by a consultant that evening, and within five days, he had his first appointment with the specialist Uveitis team at the hospital. It was all very quick.”

Charlie underwent a series of tests and the diagnosis was made using a slit lamp biomicroscopy, with a special light beam to look for inflammatory cells in the front part of the eye. He then had steroid injections to treat to treat the inflammation and avoid any permanent eye damage in the short term.

William continues: “Our initial reaction was one of shock and it took a while for it to sink in. You just think it will be temporary, that the doctors will treat it and within a month everything will be okay again. Then you realise that’s not the case and you have got to get on with things. “

After beginning regular medication to treat the eye inflammation, Charlie had his first operation, a laser treatment in Leeds, in June 2019. Charlie then had a second operation to remove scar tissue inside the eye at Sheffield Children’s, before a further procedure in May 2020 to remove the cloudy lens (cataract) and have a contact lens fitting.

He requires ongoing monitoring, attending the specialist multidisciplinary Uveitis clinic at Sheffield Children’s every four to six weeks. The clinic sees around 100 patients regularly from across Yorkshire and the Humber, as well as receiving referrals from the surrounding regions and further afield.

In this clinic, Charlie and other children have access to cutting-edge treatments and take part in clinical trials which include the use of promising new treatment therapies. Thankfully, Charlie’s no longer needs steroid eye drops with his condition improving.

Charlie continues: “I wear contact lenses so I can see. It is not fully better yet but I hope it will be one day. I see the same nurses all the time so I know them well.

“I remember staying over in the hospital, having eye and blood tests as well as playing on the computers on the ward. All the people were very nice and friendly; they looked after me and took time to talk to me. I think they’re great and doing a very good job.”

Charlie will remain under the care of Sheffield Children’s for the rest of his childhood as they ensure his medicine is effective and any new symptoms can be treated promptly.

Dad William continues: “We hope Charlie will make a full recovery, but it is a long-term process. It will take several years to work out, Charlie’s body is essentially learning how to cope with his condition. We’ve made great progress over the last two years and that’s thanks to the team at Sheffield Children’s.

“The Uveitis team are brilliant, they can spend an hour talking to you about the condition. They don’t rush you, they take their time to listen to you and explain it in great detail and just as importantly, they make sure they have explained it to Charlie too.

“The clinic coincides with one of Charlie’s favourite lessons at school, computer studies. But the hospital have been really good at moving his appointment times so he doesn’t have to miss it all.”

Jessy Choi, Consultant Paediatric Ophthalmologist at Sheffield Children’s Hospital added: “Childhood uveitis is like in a long train journey. Charlie and his family will meet many people and specialists on their way. We don’t know how many stops there are, or how long the journey will be; but we are on the train with them to do the best for them, and to make their journey as smooth as possible.”

Fundraising to say thank you

To express their gratitude for Charlie’s care, his family donated the profits from the Horse Trials they run on the Frickley Park estate in South Yorkshire.

William added: “We run the Horse Trials as a volunteer committee, and I am the official organiser. We select charities to donate the profit to and last year, we chose The Children’s Hospital Charity.

“There are around 500 competitors and 150 volunteers over the course of a weekend. Charlie and his brothers George, Harry and Freddie all come along to help out too!”

The £7,500 donated to The Children’s Hospital Charity will specifically be devoted to improving the patient experience of children with Uveitis in the Eye Department at Sheffield Children’s Hospital.

William adds: “Charlie and lots of other children have to wait quite a long time for the tests to be done, sometimes a couple of hours, so we would like the fundraising to help make their experience of visiting the Eye Department the best it can possibly be.

“It’s a tough process, so to help other children going through it is what Charlie wanted to do. He has some suggestions, from TVs to watch films, more games and a library of books to read, but we’re talking to the team about it. Ultimately, we trust them to decide whatever will make the biggest difference.”