Lily Tyson

For fifteen-year-old Lily, life with two rare conditions has its challenges. Since beginning her treatment at our family of hospitals in 2020, first for Turner Syndrome and then for uveitis two years later, she has set out on a mission to raise funds for our Charity and give back to the wonderful staff team at Manchester Royal Eye Hospital. Her fundraising journey is truly inspiring.

Fifteen-year-old Lily has been on an incredible fundraising journey since beginning her treatment at our family of hospitals in 2020. To date, she has raised thousands of pounds for Manchester Foundation Trust Charity and Turner Syndrome Support Society.  In doing so, she’s raised awareness of her conditions and has given back to the incredible hospital teams who have been involved in her care.

At twelve years old, Lily was diagnosed with Turner Syndrome, a rare, female-only genetic condition that affects 1 in every 2,000 baby girls. Those with Turner Syndrome are often shorter than average and have underdeveloped ovaries, resulting in a lack of periods and fertility issues.

Lily was born with the condition, and only went to the GP on recommendation of her dentist. The dentist noticed that she was unusually small for her age, and suggested that her family follow that up. Her family had always put it down to Lily just being small!

Lily’s trip to the GP resulted in a diagnosis of Turner Syndrome; a diagnosis that would later affect every aspect of her life. She was first treated by the endocrine team at Royal Manchester Children’s Hospital, who put her on hormone injections to support with growth and oestrogen patches to help her periods become more regular.

She has since been put on a gluten-free diet as a result of a related coeliac diagnosis and must undergo regular heart checks and endocrine appointments. Much of Lily’s life, particularly in the early stages of her diagnosis involved frequent trips to Royal Manchester Children’s Hospital.

Lily didn’t tell anyone about her diagnosis for a year. The news was difficult for the whole family to process and, aside from the team at Royal Manchester Children’s Hospital, there wasn’t much other support available.

After one very difficult appointment, during which Lily didn’t feel that her treatment was progressing in the way that she wanted, Lily decided that she wanted to do some awareness raising for Turner Syndrome Support Society. She set herself the challenge of running 70km in one month- a big challenge considering she wasn’t an experienced runner!

Lily’s Dad Chris says that the awareness raising and fundraising was transformative for Lilly: “Lily put a post out telling everyone about her condition, and the amount of responses she got was unbelievable. It’s been absolutely fantastic. Off the back of it, Lily has met other girls with the condition, and we now have a really close relationship with the charity.”

To everyone’s surprise, Lily was diagnosed with another rare condition two years later. Her vision became cloudy and, after being referred to Manchester Royal Eye Hospital, she was diagnosed with uveitis. The condition causes an inflammation of the middle layer of the eye, causing pain and changes to the vision.

Although this diagnosis was completely unrelated to her Turner Syndrome, it needed to be taken seriously. Left untreated, Lily’s uveitis had the potential to damage her optic nerve and lead to vision loss. The cause of Lily’s uveitis remains unclear, but it is thought that the cause is an autoimmune disorder.

A second diagnosis was incredibly difficult for Lily. It took her a few months to accept the diagnosis but, after some time, she began to fundraise for Manchester Foundation Trust Charity and support our Eye Hospital.

Her Dad Chris says that the incredible relationship that they have with the nursing staff is a huge reason that Lily does so much fundraising.

“We have become like family with the nursing staff. We can’t fault them. We trust them completely. The nurses are the reason that we’re doing all the fundraising. They make you feel like you’re part of a journey. If I ever need to ask question, nothing is trouble for them. If I ever feel silly about asking a question, they remind me that we’re the experts! It definitely feels like we’re all a team.”

Lily struggled with her health in 2023, so she began setting her family, friends, dad Chris’ colleagues fundraising challenges to complete in her place. Together, they are completing Lily’s ‘Let’s Go Team’ challenge, which includes a plethora of events from plank challenges to bake sales. She continues to fundraise for our Charity and Turner Syndrome Support Society.

Fundraising has become such an integral part of Lily’s life, and it has well and truly shaped her into a wonderful, determined and resilient young woman. Her family, friends and the team at Manchester Foundation Trust Charity are incredibly proud of Lily and everything that she has achieved at such a young age.

Reflecting on the fantastic impact of Lily’s fundraising, dad Chris says: “It’s given her a purpose, a real focus. She’s turned everything into a positive. Having a few conditions is tough, but she has such a resilience in raising all this awareness. She’s not letting anything she’s gone through define her. It’s just amazing.”

If you’re inspired by Lily and you’d like to get involved in fundraising for Manchester Foundation Trust Charity, click here.